Here’s a free collection of resources about Multiple Sclerosis- blogs, support groups, first-hand experiences and advice from people who have Multiple Sclerosis, etc.
Jump to:
- Multiple Sclerosis Blogs
- Multiple Sclerosis Support Groups
- Multiple Sclerosis Survey
- Multiple Sclerosis Types
- Multiple Sclerosis Symptoms
- Multiple Sclerosis Causes
- Multiple Sclerosis Interesting Facts
- Multiple Sclerosis Pain Relief
- Multiple Sclerosis Difficulties
- Multiple Sclerosis Advice
- Multiple Sclerosis Diet and Exercise
- Multiple Sclerosis Treatments
- Multiple Sclerosis Recommendations
- Multiple Sclerosis Resources
Multiple Sclerosis Blogs
Here’s a collection of Multiple Sclerosis blogs. These blogs are written by people with MS or about MS.
Multiple Sclerosis Support Groups
Multiple Sclerosis Support Groups On Facebook
- We’re Not Drunk, We Have MS! CLOSED GROUP! (20,690 members)
- Multiple sclerosis (MS) is the most common disabling neurological condition (20,088 members)
- Multiple Sclerosis Foundation Group (15,808 members)
- MSstation™ Multiple Sclerosis Radio (THE OFFICIAL FACEBOOK GROUP) (11,149 members)
- I Have MS and I’m Fabulous! Group (10,497 members)
- Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases Group (10,445 members)
- Multiple Sclerosis: OUR VOICES Group (10,249 members)
- Multiple Sclerosis support Facebook Group (9,456 members)
- I have MS and am a stronger person for it! (and Friends) Group (9,257 members)
- Persons STRIVING to SURVIVE with Multiple Sclerosis Group (8,308 members)
- M.S Connect-Multiple Sclerosis Group (7,763 members)
- Multiple Sclerosis Trust Group (7,507 members)
- MULTIPLE SCLEROSIS Group (6,798 members)
- MS friends Group (6,768 members)
- Multiple Sclerosis Awareness Group (6,428 members)
- MS Support Group (5,854 members)
- Tecfidera for MS SUPPORT Group <3 (5,785 members)
- Lemtrada for MS treatment Group (5,426 members)
- MS AND ME, OUR FIGHT FOR A CURE (CREATED BY CURE MS) Group (5,415 members)
- Multiple Sclerosis:911-Our VOICES Group (5,309 members)
- Let’s Change MS to MADE STRONGER together!! Group (5,240 members)
- Thinking Positive And Funny With Multiple Sclerosis Group (5,132 members)
- Tysabri Treatment for Multiple Sclerosis Group (4,959 members)
- Biotin for Progressive MS Group (4,669 members)
- Friends With MS Group (4,490 members)
- MS Friends Worldwide Group (4,342 members)
- LIVING WITH MS Group (3,975 members)
- MS the Invisible Disease Group (3,840 members)
- JAMWMS-Private Support Group- Just a Mommy with MS Group (3,834 members)
- No more MS Prison!! Group (3,446 members)
- Laughter for the Pain- M.S. Aware! Group (3,387 members)
- Mexico HSCT for MS & Autoimmune Diseases Group (3,346 members)
- MS Support Chat Group (3,246 members)
- MS- Changed My Life Group (3,218 members)
- Lyme Disease, Multiple sclerosis, Autoimmune, cognitive impairment Group (2,817 members)
- Multiple Sclerosis and Exercise Group (2,773 members)
- Multiple Sclerosis Awareness & Education Group (2,756 members)
- Ms. with M.S.-Ladies talk multiple sclerosis! Group (2,703 members)
- MS ( Mighty Smart ) Multiple Sclerosis Group (2,609 members)
- Overcoming MS Lifestyle Support Group (2,478 members)
- Made Strong by MS Group (2,260 members)
- Cannabis and Multiple Sclerosis Group (2,041 members)
- Multiple Sclerosis and Diet Group (2,021 members)
- MS Group (1,988 members)
- Attack MS with Nutrition & Detox Group (1,914 members)
- MS Warriors + AI and Supporters Group (1,878 members)
- Multiple Sclerosis Worldwide Friendship Page Group (1,814 members)
- The fun, funny and not so funny of a day in life with Multiple Sclerosis Group (1,810 members)
- MS, so what? Group (1,798 members)
- MS & Other Invisible Illnesses Support Group (1,794 members)
- Multiple Sclerosis Support Group (1,751 members)
- California Multiple Sclerosis Support Group (1,728 members)
- MS FRIENDS AT HEART Group (1,659 members)
- Multiple Sclerosis- HOPE & HELP Group (1,626 members)
- The Face Of MS Group (1,614 members)
- Aubagio MS Therapy Group (1,593 members)
- The Swank MS Diet and Lifestyle Group (1,565 members)
- M.S NATION CCSVI PRO- ACTIVE Group (1,509 members)
- Tecfidera And Multiple Sclerosis Support Group (1,496 members)
- MS Frontiers Group (1,436 members)
- Multiple Sclerosis & HSCT – Moving the truth into the light Group (1,402 members)
- M.S. Coping House Group (1,386 members)
- Biotin for MS Instruction Manual Group (1,372 members)
- Attitude Is Everything – MS Support and Information Group (1,368 members)
- M/S Is a HOTMESS! *Closed Group (1,325 members)
- The Other Side of MS (Multiple Sclerosis Caregivers) Group (1,323 members)
- Multiple Sclerosis…Warrior Group (1,317 members)
- Live and Thrive With MS Group (1,253 members)
- MULTIPLE SCLEROSIS (MS) ANKARA Group (1,234 members)
- MS Recovery Group (1,200 members)
- War on MS! Group (1,166 members)
- Multiple Sclerosis Australia Group (1,116 members)
- MS Changed Me Group (1,085 members)
- Heather’s MS Family Group (1,051 members)
- Multiple Sclerosis Support Group in Australia (1,046 members)
- I’m not drunk, I have M.S. Group (994 members)
- Strength with MS/FM & more Group (983 members)
- Rituxan for MS Group (962 members)
- Christians with MS (Multiple Sclerosis) Group (925 members)
- Move For MS (multiple sclerosis) Group (915 members)
- MULTIPLE SCLEROSIS THOUGHT OF THE DAY Group (842 members)
- A mess with MS! (multiple sclerosis) Group (835 members)
- muMS UK Group (809 members)
- Bikers With MS (FUMS) Group (808 members)
- HBOT/HDOT (Hyperbaric/High Dosage Oxygen Therapy) – M.E, M.S & Other… Group (789 members)
- The MS Breakfast Club Group (776 members)
- MS Warriors of Hope Group (774 members)
- MS Singles N. America Group (765 members)
- MS ACT/NSW/VIC PEER SUPPORT GROUP (749 members)
- Healthy Living with MS Group (686 members)
- MS Peer Support Group (ACT/NSW/VIC) Group (683 members)
- Secondary Progressive Multiple Sclerosis Group (662 members)
- My story- Multiple Sclerosis Group (653 members)
- #ChatMS Group (648 members)
- Multiple Sclerosis SA – Inland Group (642 members)
- M.S. UNITED – WE STAND TOGETHER WE FIGHT TOGETHER Group (637 members)
- Supporting Each Other With MS (MULTIPLE SCLEROSIS) In Australia Group (601 members)
- MS Scotland Support Group, Multiple Sclerosis Support Group (581 members)
- Heidis “MS Unicorn” Lounge Group (581 members)
- MS friends UK Group (579 members)
- Moms With MS Group (577 members)
- MS with Unconditional Love Group (557 members)
- A WATCHFUL EYE (Multiple Sclerosis) Group (547 members)
- MS’ers FB Group (531 members)
- LIVING WITH MS 101 Group (528 members)
- MS Around the World Group (516 members)
- MS SURVIVORS (ROCK ON) 🙂 Group (511 members)
- MS and Medical Marijuana Group (510 members)
- Multiple sclerosis daily stem cell for lives!!! Group (493 members)
- MULTIPLE SCLEROSIS Group (488 members)
- Pediatric Multiple Sclerosis Alliance Group (487 members)
- Midlands Multiple Sclerosis Support Group (484 members)
- MS Social Bar Group (470 members)
- Our Journey after being diagnosed with MS Group (444 members)
- MS chat room Group (429 members)
- Vitamin D and MS Group (414 members)
- Multiple Sclerosis Colorado Group (398 members)
- We Are Warriors! – Canadian MS Collective Group (392 members)
- MS Stories Group (331 members)
- The Real Women of MS Group (304 members)
- Lemtrada for MS Australia Group (293 members)
- Multiple Sclerosis Fundraiser Group (274 members)
- MS Horizons Group (262 members)
- MS Frontiers Personal Share Group (261 members)
- Multiple Sclerosis – Inspiration, Hope, & Support Group (260 members)
- Veterans With Multiple Sclerosis MS Group (257 members)
- Women Overcoming MS! Group (243 members)
- What Now? MS Support Group… (241 members)
- MS Contact list Group (223 members)
- Tumefactive Multiple Sclerosis Group (220 members)
- Low Stress MS UK Group (207 members)
- MS CARERS Australia Group (206 members)
- Multiple Sclerosis Group (194 members)
- Women Of Color with Multiple Sclerosis Group (191 members)
- Multiple Sclerosis in Kentucky & So. Indiana Group (190 members)
- MS Warriors in AZ Group (184 members)
- Western KY Multiple Sclerosis Support Group (172 members)
- The Non-Politically Correct Multiple Sclerosis Group (169 members)
- We Are MS Warriors Group (157 members)
- Men with Multiple Sclerosis Group (148 members)
- Multiple Sclerosis Northern Ireland ” MS’ers” Group (146 members)
- Multiple Sclerosis Awareness Group (140 members)
- Cure for Multiple sclerosis. Group (138 members)
- MS Carers Club UK Group (136 members)
- MS Men: Multiple Sclerosis Support Group For Men Group (135 members)
- NXNW Austin, Texas Multiple Sclerosis Support Group (130 members)
- MS Finest Group (123 members)
- Peterborough And District Ms Society Branch Group (122 members)
- Utah Friends with MS Group (118 members)
- Help get Multiple Sclerosis (MS) sufferers in NZ the treatment they deserve Group (114 members)
- Single with MS Multiple Sclerosis Group (112 members)
- Long Island, NY Multiple Sclerosis Community (108 members)
- Finding a Cure for Multiple Sclerosis Group (104 members)
- MS Central Group (100 members)
- The Multiple Sclerosis Therapy Group, Essex Group (87 members)
- Multiple Sclerosis: UN-censored religion welcomed Group (86 members)
- MS Girl ~ You Know The One Group (86 members)
- Doing cartwheels in the Multiple Sclerosis waiting room Group (85 members)
- MS Warriors Dragonboat Team Group (85 members)
- Multiple Sclerosis Working In The Community Group (76 members)
- Wichita Falls MS Group (74 members)
- Lincolnshire Ladies with MS Group (74 members)
- Multiple Sclerosis – Spreading Awareness!!! Group (69 members)
- Multiple Sclerosis Halifax / Mecklenburg County Virginia Group (69 members)
- Support for Progressive MS (Multiple Sclerosis) Group (68 members)
- Multiple Sclerosis Peer Group (66 members)
- Multiple Sclerosis Awareness Group (63 members)
- WNY Change MS Multiple Sclerosis Warriors Group (61 members)
- Multiple Sclerosis Community of Guam Group (57 members)
- Multiple Sclerosis Alternative Healing Support Group (55 members)
- MS-HOPE Multiple Sclerosis Research: Hope for patients and Families Group (54 members)
- Multiple Sclerosis Support Group (53 members)
- Fight MS!! Multiple Sclerosis 2015 Group (53 members)
- Supporting Multiple Sclerosis Society Group (53 members)
- Multiple Sclerosis Group (52 members)
- (LDN) HOPE FOR THOSE WITH MULTIPLE SCLEROSIS Group (51 members)
- Multiple Sclerosis in Another Light Group (51 members)
- Multiple Sclerosis & Christ Group (51 members)
- Multiple Sclerosis Events Group (51 members)
- West Alabama Multiple Sclerosis Support Group (WAMSS) (42 members)
- Multi-cultured People With Multiple Sclerosis Group (38 members)
- Multiple Sclerosis Group (35 members)
- MS (Multiple Sclerosis) Fighters, Family and Friends affected by MS Group (33 members)
- AMS-Annihilate Multiple Sclerosis Group (33 members)
- Richmond & Kingston Multiple Sclerosis Branch Group (33 members)
- Multiple Sclerosis Chat Group (31 members)
- DefeatingMS (Multiple Sclerosis) Group (30 members)
- An “EBENEZER” for Multiple Sclerosis Group (23 members)
- Laughing at Multiple Sclerosis Group (21 members)
Google Plus Multiple Sclerosis Support Communities
- Multiple Sclerosis Community (1,661 members)
- Multiple Sclerosis Awareness Community (675 members)
- Join the Movement Community (535 members)
- Living With Multiple Sclerosis ~ EVERYONE WELCOME Community (506 members)
- Multiple Sclerosis Support Group (495 members)
- Multiple Sclerosis: Drawing the Line Community (430 members)
- MS Diet For Women Community (309 members)
- Multiple Sclerosis Community (159 members)
- We Care and Share MS Support Group (140 members)
- Arresting Progressive Multiple Sclerosis Community (109 members)
- MS (Multiple Sclerosis) Community (86 members)
- MS Unites: Multiple Sclerosis Community (62 members)
- MS+ (Multiple Sklerose Community) (55 members)
- Life With M.S. Community (44 members)
Other Multiple Sclerosis Support Groups And Forums
- MS Society Forums
- MS Connection Online Groups
- MS Connection Discussion Forum
- MSWorld Forums (77,906 members, 256,844 posts)
- This is MS Forum (16,357 members, 234,110 posts)
- Multiple Sclerosis Support Group (15,981 members, 15,594 posts)
- Overcoming MS Forum (15,499 members, 44,152 posts)
- DailyStrength Multiple Sclerosis (MS) Support Group (574 members, 21,315 posts)
- Drugs.com Multiple Sclerosis Support Group (394 members, 356 questions)
- Patient.info Multiple Sclerosis Discussions (388 members, 505 posts)
- MedHelp.org Multiple Sclerosis Community (31,241 questions)
- BrainTalkCommunities.org Multiple Sclerosis Forum
- HealingWell.com Multiple Sclerosis Forum
- HealthBoards.com Multiple Sclerosis Message Board
- eHealthForum.com Multiple Sclerosis Forum
- Caring.com Multiple Sclerosis Support Group
- MSDiscovery.org Multiple Sclerosis Discovery Forum
- MultipleSclerosis.net Forums
Browse In-Person Support Groups And Events In The United States
*Look up National MS Society local support groups.
*Browse Meetup.com local meetups.
*Search for local MS LifeLines live events.
*Browse MS Connection Local Groups.
Multiple Sclerosis Survey
We are surveying people about their experiences with Multiple Sclerosis. Here will be a collection of their responses.
*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!
*Response format = Answer (Name, Age)
**Click here to share your experience with Multiple Sclerosis**
Multiple Sclerosis Types
What type of Multiple Sclerosis do you have? (RRMS, SPMS, PPMS, PRMS)
- RRMS. (Alyssa, 25 years old)
- RRMS. (Ginny, 30 years old)
- RRMS. (Stephanie, 30 years old)
- RRMS. (Tonie S, 30 years old)
- RRMS (Ellen K, 31 years old)
- RRMS (Brandi L, 32 years old
- RRMS. (Aubrey, 33 years old)
- RRMS. (Joe, 34 years old)
- RRMS. (Chiara P., 37 years old)
- PPMS. (Lucy, 38 years old)
- PPMS. (Ethan C., 39 years old)
- RRMS. (Allison, 40 years old)
- RRMS. (Amy, 40 years old)
- RRMS. (Phil, 40 years old)
- RRMS. (Saundra, 41 years old)
- RRMS. (Tracy, 43 years old)
- PPMS. (Anonymous, 44 years old)
-
RRMS. (Jill, 44 years old)
- RRMS. (Jim T, 44 years old)
- RRMS. (Tiffany, 44 years old)
- RRMS. (Constance F, 45 years old)
- RRMS. (Diane, 45 years old)
- PPMS. (Ruth S, 45 years old)
- RRMS. (Spencer, 45 years old)
- RRMS. (Michelle, 45 years old)
- RRMS. (Richie R., 45 years old)
-
RRMS. (Jantien, 47 years old)
- RRMS. (Jenifer R., 47 years old)
- RRMS. (Tara L., 47 years old)
- SPMS. (Hayley, 48 years old)
- RRMS. (Colleen, 48 years old)
- RRMS. (Edel M, 48 years old)
- PPMS. (Hayley S., 48 years old)
- SPMS. (Nancy M., 48 years old)
- SPMS. (Anonymous, 49 years old)
- RRMS. (Christine D, 49 years old)
- PPMS. (Martin M., 49 years old)
- RRMS. (Paati P., 49 years old)
- RRMS. (Luc P, 50 years old)
- PPMS. (Paul A., 50 years old)
- RRMS. (Darlene, 51 years old)
- RRMS. (Susan A., 51 years old)
- PPMS. (Sherry, 51 years old)
- SPMS. (Vonday, 51 years old)
- I dunno. Neurologist suspects it may be secondary progressive, but my symptoms are a bit odd. (R Sansone, 52 years old)
- RRMS. (Cindy, 52 years old)
- RRMS. (Inge D, 52 years old)
- SPMS. (Anonymous, 52 years old)
- PPMS. (Alejandro A, 53 years old)
- PPMS. (Brian B., 53 years old)
- RRMS. (Sherri R., 53 years old)
- SPMS. (Kimberly M., 55 years old)
- RRMS (Lisa R, 55 years old)
- RRMS. (Anne, 56 years old)
- SPMS. (Sirpa T, 56 years old)
- SPMS. (Sue, 56 years old)
- PRMS. (Claire D. G., 57 years old)
- SPMS. (Midge K., 57 years old)
- SPMS. (Anne, 58 years old)
- PPMS. (Steve, 58 years old)
- RRMS. (Valerie, 58 years old)
- RRMS. (Anonymous, 58 years old)
- SPMS. (Diane E., 59 years old)
- SPMS. (Leah, 59 years old)
- SPMS. (Pat S., 59 years old)
- RRMS. (Peter T., 59 years old)
- SPMS. (Jeanne, 61 years old)
- PPMS. (M. Davenport, 61 years old)
- SPMS. (Vivien O., 61 years old)
- RRMS. (Louis S, 62 years old)
- SPMS. (Monica, 62 years old)
- RRMS but doctor is thinking I’ve gone into SPMS. (Carla, 62 years old)
- PPMS. (JJ S, 62 years old)
- SPMS. (Dawn, 63 years old)
- RRMS. (Douglas K, 63 years old)
- RRMS. (Patty C., 63 years old)
- SPMS. (Anita, 64 years old)
- PPMS. (Carol G, 64 years old)
- PPMS. (David, 64 years old)
- RRMS. (Margaret, 64 years old)
- PPMS. (Francois, 64 years old)
- SPMS. (Sue L, 64 years old)
- RRMS. (Linda, 65 years old)
- RRMS. (Elaine S., 66 years old)
- SPMS. (Patricia, 66 years old)
- PPMS. (Daniel, 67 years old)
- SPMS. (Eric, 67 years old)
- PPMS. (Neale, 67 years old)
- Unknown. (Bev, 68 years old)
- SPMS. (Eleanor R., 68 years old)
- SPMS. (Jen B, 68 years old)
- PPMS. (Tom H, 68 years old)
- PPMS. (Keith, 72 years old)
- PPMS. (Paulette, 72 years old)
- RRMS (Elaine, 73 years old)
Multiple Sclerosis Symptoms
What symptoms have you experienced?
- Vertigo, double vision, pain, fatigue, spasms, urinary retention, memory/cognitive issues. (Alyssa, 25 years old)
- Facial pains, severe headaches, numbness of hands feet and belly, blurred vision, l’hermitte’s signal, nystagmus, dizziness, muscle spasms in legs. (Ginny, 30 years old)
- Numbness, tingling, dizziness, optic neuritis. (Stephanie, 30 years old)
- Burning feet/hands, vibrations, blurry vision, fatigue, restless legs/hand twitching, groin pain, neck pain, terminal neuralgia, weakness in legs dragging etc, loss of sensation in right hand, spasms. (Tonie S, 30 years old)
- Pain in hands and pols, pain in knees, pain in hips sometimes, confused a lot, pain in my back also, not stable on my feet, sweating very much, I forget almost everything, stare absently, concentration is difficult. (Ellen K, 31 years old)
- Fatigue, numbness, vertigo, bladder problems, weakness, blurred vision, hoarse. (Brandi L, 32 years old)
- Fatigue, vertigo, double vision, optic neuritis, insomnia. (Aubrey, 33 years old)
- Pain, stiffness, spasms, fatigue, headaches, pins and needles, numbness, confusion, loss of words, balance issues, eye issues. (Joe, 34 years old)
- Numb feet, bumping into the walls and coordination. (Chiara P., 37 years old)
- Balance issues, tingling/throbbing in lower legs, difficulty walking too far, fatigue, bladder issues. (Lucy, 38 years old)
- Spasticity, fatigue, poor control of hands, insomnia. (Ethan C., 39 years old)
- Fatigue, numbness, pain, balance issues. (Allison, 40 years old)
- Numbness, weakness, fatigue, neuropathic pain, MS hug (terrible name), bladder issues, etc. (Amy, 40 years old)
- Balance issues and difficulty lifting right foot make walking difficult some times (especially when tired), vertigo, band of numbness across chest, numb fingertips, pins and needles (soles of feet) phantom itches (chest), problems emptying bladder properly, cognitive issues (concentration), one eye looked in the wrong direction for some months, auditory sensitivity (high frequencies). (Phil, 40 years old)
- Left side (arm & leg) are highly damaged. (Saundra, 41 years old)
- Numbness, eyesight issues. (Tracy, 43 years old)
- Every single rotten one. (Anonymous, 44 years old)
-
Bad leg, tired, brain fog, brain problems, to name a few. (Jill, 44 years old)
- Bad leg, tired, brain fog, brain problems, to name a few. (Jim T, 44 y ears old)
- Optic neuritis, numbness, limb weakness, fatigue, tingling. (Tiffany, 44 years old)
- Spasticity, pain, MS hug, numbness, tingling in both hands and feet, weakness in legs, frequent urination, depression, positive babinski on last Neuro exam, blurred and double vision when tired. Fatigue. Severe cognitive disabilities. Optic neuritis. (Constance F, 45 years old)
- Right side weakness, fatigue, difficulties in swallowing, speech, relapses affect legs and walking. (Diane, 45 years old)
- Dizziness, bad balance, spastism, stiffness, heat intolerance. (Ruth S, 45 years old)
- Too many to list: numbness, pain, vision problems, cold/hot sensations, etc. (Spencer, 45 years old)
- Tingling, spasticity, numbness, headaches, muscle aches, eye sight issues , incontinence, emotional fatigue, heat intolerance. (Michelle, 45 years old)
- Fatigue, dizziness, loss is appetite, heat issues. (Richie R., 45 years old)
-
Tintelende vingers tot aan kaaklijn, doof been, extreem moe, zakelijke door mijn benen. (Jantien, 47 years old)
- You name it I got it. (Jenifer R., 47 years old)
- Optic neuritis. (Tara L., 47 years old)
- Leg stiffness, bladder incontinence. (Colleen, 48 years old)
- Pins and needles. (Edel M, 48 years old)
- Muscle weakness and stiffness in legs, OAB and fatigue. (Hayley, 48 years old)
- Weakness, dizziness, lack of balance, lack of coordination, extreme spasticity, toes curling under insomnia, constipation, urinary incontinence, trouble walking (ran marathons till diagnosis in 2013 and 60km a day; now barely walk 100m). (Hayley S., 48 years old)
- Paralysis of lower extremities, decreased functioning of upper extremities (right arm and hand non-functional), weak core muscles, decreased range of motion, severe spasticity (uncontrollable leg spasms), vertigo, optic neuritis resulting in double vision and peripheral loss of vision in beginning of MS. (Nancy M., 48 years old)
- Optic neuritis, dizziness, cognitive impairment, fatigue. (Anonymous, 49 years old)
- Nerve pain, decreased mobility, fatigue, bladder and bowel problems, dizziness. (Christine D, 49 years old
- Numbness, tingling, optic neuritis, falls, unsteady gait, heat intolerance, lhermittes sc. (Paati P., 49 years old)
- Fatigue, weakness, eye problems etc. (Luc P, 50 years old)
- Trouble walking freely. Have to use an elbow crutch and a wheelchair outside. (Paul A., 50 years old)
- Double Vision, ataxia, numbness, balance problems, coordination problems, headaches and many more… (Darlene, 51 years old)
- Fatigue, numbness, tingling, deep itch, drop foot, off balance, eye pain, double vision, speech, bladder/bowel, burning sensation, cognitive issues, pain, sleep patterns, depression and anxiety. (Susan A., 51 years old)
- Fatigue, bladder and bowel impairment, cognitive confusion and brain fog, foot drop. (Sherry, 51 years old)
- pain, weakness. have to use a walker. (Vonda, 51 years old)
- Weakness, foot drop, sudden collapses, eyesight diminishment, cognitive disruption(s), fatigue, balance issues, etc…(R Sansone, 52 years old)
- Extreme fatigue dizziness cognitive issues muscle weakness. (Cindy, 52 years old)
- Pain in my legs. (Inge D, 52 years old)
- Ambulations issues. Left leg mobility has decreased.. (Anonymous, 52 years old)
- Fatigue, leg weakness, spasticity, urologics. (Alejandro A, 53 years old)
- Vision difficulties, balance problems, leg weakness, bowel and bladder problems, ed, heat intolerance. (Brian B., 53 years old)
- Fatigue, cognitive difficulties, foot drop, gait in general. (Sherri R., 53 years old)
- Everything. (Denise D., 54 years old)
- Weakness in limbs, tremors, crappy cognitive, bladder issues. (Kimberly M., 55 years old)
- Stiffness legs, spasms arms/legs, brain fog, balance issues. (Lisa R, 55 years old)
- Numbness in face and body. Tingling in face and fingers. Extreme coldness in parts of my body making it feel like ice. Lack of bladder control. Severe neurological pain bad balance. Drop foot, bad coordination. Double vision and lack of control in focusing my eyes. (Anne, 56 years old)
- EDSS 6.5, trouble walking, bad balance, bad fine motor skills. (Sirpa T, 56 years old)
- Numbness, dizziness, mobility issues, incontinence. (Sue, 56 years old)
- Balance issues, pain in feet, spasms in legs. (Claire D. G., 57 years old)
- Numbness, tingling, elasticity in legs, hypertonicity in legs, neurogenic bladder, foot drop, poor mobility, MS fatigue, chronic insomnia. (Midge K., 57 years old)
- Spasms, weakness on the right side, in wheelchair now.. (Anne, 58 years old)
- Pain and fatigue. Use walker and wheelchair. (Steve, 58 years old)
- Blind and weak left side, trouble walking. (Valerie, 58 years old)
- Numbness, tingling, mobility, pain, balance, brain fog, fatigue. (Anonymous, 58 years old)
- Fatigue, pain, dropping everything, urinating all the time or just thinking I have to, low vitamin D, sleeping all the time or can’t sleep, can’t remember anything, the list goes on. (Diane E., 59 years old)
- Currently: foot drop, inability to lift right leg, reduced tactile sensation, urinary frequency and urgency, reduced bowel motility. In the past I have had blurred vision, lost my hearing in one ear for 3 weeks. (Leah, 59 years old)
- Paresthesias hands and legs. Weakness in legs. Poor balance. Incontinence. (Pat S., 59 years old)
- Fatigue, UTI, spasticity, tremors, foot drop. (Peter T., 59 years old)
- Past total deterioration of muscles/cramping/speech loss), fluctuating eyesight, and sensitivity to the sun. (L. Stewart, over 60 years old)
- Optic neuritis, tingles, skin irritation, muscle pain, poor balance, poor mobility. (Jeanne, 61 years old)
- Tired, all time-numbness in feet, legs, and hands. (M. Davenport., 61 years old)
- Optic neuritis, walking difficulties, foot drop. (Vivien O., 61 years old)
- Very weak leg, bladder issues, constipation. (Lois S, 62 years old)
- Numbness, falling, gastroparesis, inability to walk without assistive devices, permanent urinary retention. (Carla, 62 years old)
- Vision, loss of hearing, drop foot, bladder issues. (JJ S., 62 years old)
- Most things! Now, I can hardly walk, and am in a motorized wheelchair. (Monica, 62 years old)
- Drop foot Balance, bladder and bowel problems. (Dawn, 63 years old)
- Optic neuritis, walk, seizures. (Douglas K, 63 years old)
- Optic Neuritis, balance issues, tingling, numbness. (Patty C., 63 years old)
- Weakness, numb feet, temporary blindness in one eye, the “hug”, temporary paralysis in one hand (twice), swollen hand, swollen feet, weak bladder, tired and sleepy all the time, weak voice, scoliosis, leg stiffness. Depression and hopelessness. (Anita, 64 years old)
- Drop foot, imbalance, fatigue, aches and pains, stiff toes. (Carol G, 64 years old)
- Fatigue, lack of concentration, more and more difficult to walk because my right members are becoming weak and numb. (Francois, 64 years old)
- Balance problems when walking, fatigue, bladder – frequency and urgency, bowel – occasional incontinence, hand tremor. (David, 64 years old)
- Mostly sensory. Legs are numbered. Double vision at times and fatigue. (Margaret, 64 years old)
- Balance, unable to walk far, fatigue, incontinence. (Sue L, 64 years old)
- Too many to name. (Linda, 65 years old)
- Balance, cognitive impairment, spasms, burning, freezing pain in legs, speech impairments, bladder problem. (Elaine S., 66 years old)
- Optic neuritis, numbness, pain, fatigue, balance and cognitive issues. (Patricia, 66 years old)
- Inability to walk, incontinence, brain fog. (Daniel, 67 years old)
- Pins and needles l/s, poor balance and gait, cognitive issues. (Eric, 67 years old)
- Fatigue, bladder spasms, weak left side. (Neale, 67 years old)
- Difficulty walking, dizziness, pins and needles, extreme fatigue, brain fog. (Bev, 68 years old)
- Fatigue, immobility, eyesight and speech problems, balance, bladder issues, etc. (Eleanor R., 68 years old)
- Pins & needles, “lead” legs, fatigue, poor bladder control, weakness. (Jen B, 68 years old)
- My legs – the left leg pretty much stopped doing what I told it to do in the mid-1990s. Though the doctors tell me my right leg is the stiffer one, it functioned nearly normally until about a year ago. I also have bowel and bladder problems. (Tom H, 68 years old)
- Fatigue, dizziness, loss of balance, mobility, muscle pain, bladder problems. (Keith, 72 years old)
- Eyes, legs, bladder. (Paulette, 72 years old)
- I still have “invisible” symptoms; suffer with cognitive issues; balance issues and more. (Elaine, 73 years old)
Multiple Sclerosis Causes
Is there anything you believe contributed to your condition?
- Smoking, unhealthy weight and diet, contracting mono. (Alyssa, 25 years old)
- Stress and/or hot weather. (Ginny, 30 years old)
- Stress and anxiety, low vitamin D. (Stephanie, 30 years old)
- Yes, walking is sometimes hard , sometimes I need a wheelchair or Walker. Bicycles: I’ll be scared for doing this because I have problems with my stability. (Ellen K, 31 years old)
- Stress, heat. (Brandi L, 32 years old)
- My dad also has MS. His initial symptoms were different from mine, but appeared at the same age as mine. He also had PPMS. (Lucy, 38 years old)
- Don’t know. (Chiara P., 37 years old)
- Not being breastfed as a newborn infant seems suspicious, according to an expert author. (Ethan C., 39 years old)
- Heat, stress? (Amy, 40 years old)
- Stress, no doubt about it. (Phil, 40 years old)
- Severe stress. (Saundra, 41 years old)
- Unsure. (Tracy, 43 years old)
- Ebv, stress, genetics, gut bacteria. (Anonymous, 44 years old)
- Maybe stress. Flare ups have all happened at stressful/ lack of sleep times and during winter months. (Tiffany, 44 years old)
- Stress. (Diane, 45 years old)
- My high school Francis Howell high school in Weldon springs, NO was one of the sights of the Manhattan project. It was a toxic area and many of its previous students have health issues including MS. (Michelle, 45 years old)
- Stress. (Richie R., 45 years old)
- Permeability of my blood-brain barrier. (Spencer, 45 years old)
-
Nierbekkenontsteking. (Jantien, 47 years old)
- Genetics. (Jenifer R., 47 years old)
- Diet stress and lack of nutrients. (Tara L., 47 years old)
- No. (Colleen, 48 years old)
- No. (Edel M, 48 years old)
- Not sure. Had very bad glandular fever at age 11; being unable to stand might be a possible first symptom. Had chicken pox at age 25. (Hayley S., 48 years old)
- No. (Nancy M., 48 years old)
- Bowel infection, candida overgrowth, stress. (Christine D, 49 years old)
- I have a history of Endothelial Dysfunction! (Martin M., 49 years old)
- I’ve had it for 25 years and I had mono as a teenager- was diagnosed at 23 years old. (Paati P., 49 years old)
- I am diabetic as well. (Paul A., 50 years old)
- Stress, Heat. (Darlene, 51 years old)
- No. (Susan A., 51 years old)
- No. (Sherry, 51 years old)
- Stress, limping when I walk, always have to wear a catheter, cant drive anymore. (Vonda, 51 years old)
- Perhaps the auto crash I was in many years ago. Sudden trauma seems to kick off the disease in many of us. (R Sansone, 52 years old)
- Heat, over excursion, trying to take care of mom without help from my brother no family support stress financial issues anxiety. (Cindy, 52 years old)
- No. (Anonymous, 52 years old)
- Exercise (stationary bike, yoga, stretching). (Alejandro A, 53 years old)
- When I was first dx, I freaked out and spent a year on the couch. It didn’t help my leg weakness. (Brian B., 53 years old)
- No. (Sherri R., 53 years old)
- No clue. (Denise D., 54 years old)
- Family history of MS. (Kimberly M., 55 years old)
- Two Humira injections for psorisis created double vision prob that had me eventually ending up in Neuro office for tests. Stress BIG factor. Heat intolerance. (Lisa R, 55 years old)
- Virus. (Anne, 58 years old)
- Hard to say, but I believe the first symptoms appeared two weeks after I was vaccinated against whooping cough in 2000. (Sirpa T, 56 years old)
- Meningitis at 16 years old. (Sue, 56 years old)
- Diet. Stressful lifestyle. (Claire D. G., 57 years old)
- No – first one in my family with MS. (Midge K., 57 years old)
- No idea. (Anne, 58 years old)
- Mono. (Steve, 58 years old)
- No idea. (Valerie, 58 years old)
- Hereditary. (Diane E., 59 years old)
- Prior to diagnosis, extreme sleep deprivation and stress. (Pat S., 59 years old)
- Pernicious Anemia. (Peter T., 59 years old)
- I think a fall and injury accelerated the disease as the added stress, and blood needed to heal could have been factors. (L. Stewart, over 60 years old)
- Stress. (Jeanne, 61 years old)
- Not sure. (M. Davenport, 61 years old)
- No. (Vivien O., 61 years old)
- Black mold. (Lois S, 62 years old)
- No. (Carla, 62 years old)
- Heredity. I have two cousins with it, also. (JJ S., 62 years old)
- Car accident, glandular fever? (Monica, 62 years old)
- Don’t know for sure. (Douglas K, 63 years old)
- Family history. (Patty C., 63 years old)
- I don’t know . I didn’t drink alcohol or soda or coffee. No smoking or drugs. It must be a bad gene. (Anita, 64 years old)
- Had an operation three years ago to fuse three spinal vertebrae after an accident damaged two vertebrae – symptoms manifested about a year after this. (David, 64 years old)
- I don’t know. (Francois, 64 years old)
- No. (Margaret, 64 years old)
- The food we eat – so many additives. (Sue L, 64 years old)
- No. (Linda, 65 years old)
- Doctors took too long to diagnose, said I was lazy and did no MRI or spinal tap for 20 years! (Elaine S., 66 years old)
- A problem with blood platelets as a teenager. (Patricia, 66 years old)
- Serving in Vietnam. (Daniel, 67 years old)
- Maybe swimming as a kid in polluted Jamaica Bay in NY, or running through the clouds of DDT used in the 50’s -60’s to kill mosquitoes. (Eric, 67 years old)
- Stress, genes. (Neale, 67 years old)
- No. (Bev, 68 years old)
- Unknown. (Eleanor R., 68 years old)
- Stress possibly. (Keith, 72 years old)
- Always wonder about that. (Elaine, 73 years old)
Multiple Sclerosis Interesting Facts
What are some interesting facts you’ve learned about Multiple Sclerosis?
- Certain foods and experiences can trigger symptoms. Staying healthy and active will reduce symptoms. (Alyssa, 25 years old)Can cause you to be hoarse. (Brandi L, 32 years old)
- It is different for everyone, no two cases are the same. (Aubrey, 33 years old)
- That it hits women harder. (Chiara P., 37 years old)
- It affects my ability to speak. (Ethan C., 39 years old)
- Get you vitamin D level checked!! (Amy, 40 years old)
- It’s not the same for everyone. Going vegan 6 years ago has slowed or even stopped my progression. (Saundra, 41 years old)
- Different symptoms for each and every person. (Tracy, 43 years old)
- The FDA is hindering progress. (Anonymous, 44 years old)
- Snowflake disease. (Michelle, 45 years old)
- It can get severe with relapses, and get better upon recovering from a relapse. Usually takes me 3-4 months to recover. (Constance F, 45 years old)
- Too many to list: facts about geographic distribution of the disease, causes, types of research that are and are not conducted, etc. (Spencer, 45 years old)
- That the best doctors are not neurologist. (Richie R., 45 years old)
- Every case is different. (Jenifer R., 47 years old)
- Gut bacteria. (Tara L., 47 years old)
- Nothing, my older brother had MS. (Colleen, 48 years old)
- That you have to take one day at a time. (Edel M, 48 years old)
- No cause and no cure. (Nancy M., 48 years old)
- There are lots more symptoms than I knew. Itchiness for example. (Anonymous, 49 years old)
- You can increase muscle strength by exercise and lessen fatigue with healthy diet. Brain training helps stabilizing the disease and work is a contributing factor to brain health. (Christine D, 49 years old)
- So-called Multiple Sclerosis (MS) is an UNPROVEN autoimmune THEORY based solely on SYMPTOMS. (Martin M., 49 years old)
- That every case is different. Fever can cause sx. (Paati P., 49 years old)
- There is no cure. (Paul A., 50 years old)
- That it is often known as an invisible disease. (Susan A., 51 years old)
- Everyone is different. (Sherry, 51 years old)
- The heat bothers me all the time- it wipes me out. I don’t do the cold well either. (Vonda, 51 years old)
- That there is no cure! And that now the number of disease-modifying drugs is increasing. (Anonymous, 52 years old)
- The impact of external factors (temperature, humidity, stress, diet). (Alejandro A, 53 years old)
- Keep using it while you have it. (Brian B., 53 years old)
- That it changes every day and there isn’t one case that is exactly the same as another. (Sherri R., 53 years old)
- We are all different, but the same. (Kimberly M., 55 years old)
- MS is not something that is on the “outside” to be seen. People don’t understand what it does to your body and can be real jerks. (Lisa R, 55 years old)
- To ride out the relapse unless it’s real bad, in which case seek medical attention. (Anne, 56 years old)
- It is hard to relieve pain caused by damaged nerves, I can still manage mine without lots of medication but I can see the need for it in the future. (Sirpa T, 56 years old)
- Everyone is different. (Sue, 56 years old)
- That there is a big portion of the disease mechanism related to vascular Health. Diet & lifestyle are key to preventing progression of the disease. (Claire D. G., 57 years old)
- No two days are the same. Put extra time in your schedule to get ready when going out. (Midge K., 57 years old)
- Everyone is different. (Anne, 58 years old)
- That every day is different. (Valerie, 58 years old)
- Everyone’s symptoms are so unique. (Anonymous, 58 years old)
- It’s a snowflake disease. (Diane E., 59 years old)
- Variable progression. There is no specific cause as yet. (Pat S., 59 years old)
- It’s individuality. (Peter T., 59 years old)
- Multiple Sclerosis is a blood circulatory disease that back flushes iron into your brain. (L. Stewart, over 60 years old)
- So many variations. (Jeanne, 61 years old)
- Drug costs are unreal. (M. Davenport, 61 years old)
- Everyone with MS has a different experience. (Vivien O., 61 years old)
- It’s insidious. (Carla, 62 years old)
- Don’t listen to people who don’t know the facts. (JJ S., 62 years old)
- DIET helps, you know your own body best! (Monica, 62 years old)
- It is different for everyone. (Douglas K, 63 years old)
- Nobody has your same story. (Patty C., 63 years old)
- MS is incurable. (Anita, 64 years old)
- I have read lots of online information – wish scientists understood it better and had some treatments for PPMS. (David, 64 years old)
- All individuals with MS live their illness differently. (Francois, 64 years old)
- Nothing really. (Margaret, 64 years old)
- About the time you think you understand all there is about MS, you find that you’re wrong. (Linda, 65 years old)
- JC virus and Tysabri, I “re-learned” how to walk, meds are not “one med fits all”. (Elaine S., 66 years old)
- How it actually varies from day to day. (Patricia, 66 years old)
- You have to get it, to get it. (Eric, 67 years old)
- Can’t be cured but exercise helps heaps. (Neale, 67 years old)
- Research your symptoms. It is very spasmodic- good days and bad. (Bev, 68 years old)
- That neurologists – the so-called MS Specialists – don’t have a clue. (Eleanor R., 68 years old)
- The different ways MS affects people never ceases to amaze me. (Tom H, 68 years old)
- Can’t stand heat. Varies from day to day. (Keith, 72 years old)
- There is really no medicine that works long term for me. (Paulette, 72 years old)
- In hindsight, I have had it for too many years to count; definitely have had it for 36 years. (Elaine, 73 years old)
Multiple Sclerosis Pain Relief
What’s been your experience with pain and pain relief?
- My pain is due to long hours on my feet at work. Usually a Baclofen and an ibuprofen eases it a bit. (Alyssa, 25 years old)
- Mostly severe headaches that get misdiagnosed as migraines but do not respond to medication that reduce migraines and the pain. And that the doctors have no clue how to treat the severe headaches. (Ginny, 30 years old)
- I don’t have much pain related to my MS. (Stephanie, 30 years old)
- I deal with pain as best I can and I don’t take any pain medication just paracetamol. (Tonie S, 30 years old)
- Pain sucks. No one believes me so I have to suffer. When they do believe me I get a prescription that doesn’t touch the pain, it just gets me stoned. I just got a new doctor and started Sativex yesterday. I can see how this will help as with my slow intake of sprays has not taken all the pain, but made it more bearable. (Joe, 34 years old)
- Back pain, and I have not found anything to relieve my pain. (Chiara P., 37 years old)
- I take Gabapentin which keeps the discomfort manageable.
- Zero interest in pain drugs. (Ethan C., 39 years old)
- Pain frequently in back and neck due to muscle spasms. Better with Baclofen but nothing totally relieves the pain. (Allison, 40 years old)
- Pain is a huge issue. I use marijuana edibles, Lyrica (my dose isn’t high enough yet), Tramadol (it makes me nauseous). (Amy, 40 years old)
- Magnesium and cannabis both help. (Phil, 40 years old)
- My pain tolerance is pretty high, so on a daily basis I run at about an 8 or 9. However, drinking my green juice and having extra vitamin d helps. (Saundra, 41 years old)
- Luckily MS hasn’t caused me any pain. (Tracy, 43 years old)
- CBD oil, Zanaflex. (Anonymous, 44 years old)
-
It goes and come as it pleases. Pain relief does really work, I feel. (Jill, 44 years old)
- It goes and come as it pleases. Pain relief does really work, I feel. (Jim T, 44 years old)
- Hasn’t been painful, more strange feelings than pain. (Tiffany, 44 years old)
- Seeing pain Dr. for pain with MS and for shoulder injury. (Constance F, 45 years old)
- Use Ampyra. (Ruth S, 45 years old)
- Pain hurts. That’s my experience. I don’t see pain relief, as I see pain as part of life. (Spencer, 45 years old)
- Pain can get bad. You use whatever helps. Sometimes it’s hit and miss getting the right med. (Michelle, 45 years old)
- No pain. (Richie R., 45 years old)
-
Niets helpt echt. (Jantien, 47 years old)
- Not really applicable. (Tara L., 47 years old)
- Luckily I do not have pain with my MS. (Colleen, 48 years old)
- Paracetamol, that’s about it. Anti-spasticity back of energy and Fampyra help. (Hayley S., 48 years old)
- Experience intermittent mild to moderate pain. Occasionally, I use Voltaren gel on my knee but it’s not related to MS. I use Hydrocodone at a very low dose if absolutely necessary. (Nancy M., 48 years old)
- Pain killers do not relieve muscle pain. Medical marijuana as oil works better than regular pain killers. (Christine D, 49 years old)
- None. (Edel M, 48 years old)
- No pain therefore no pain relief. (Anonymous, 49 years old)
- I’ve only experienced pain while I have an exacerbation. (Paati P., 49 years old)
- Easily managed. (Paul A., 50 years old)
- I have experienced excruciating pain all over my body that was treated with a max dosage of Gabepentin. (Susan A., 51 years old)
- Pregabalin. (Sherry, 51 years old)
- Chronic headaches and back pain lots of digestive issues. (Cindy, 52 years old)
- No pain. (Anonymous, 52 years old)
- I have a very high tolerance for pain. (Brian B., 53 years old)
- My pain usually comes in the evening. (Sherri R., 53 years old)
- Nothing stops the pain, only some narcotics make it bearable. (Denise D., 54 years old)
- Pain meds make me sleep. (Kimberly M., 55 years old)
- I’ve been lucky. Not much pain. (Lisa R, 55 years old)
- I’ve tried lots of pain killers over the years. I’m on Pregablin (Lyricia) and Tramadol with occasional Oxycontin when required. (Anne, 56 years old)
- Take Ibuprofen only for pain. (Sue, 56 years old)
- Pain is felt mostly in legs due to increased tone and spasticity and hypersensitivity. I wear loose skirts and dresses, rarely wear socks or panty hose, shoes are slip on. Stretching helps but is painful until I get into the desired position for my legs. Medication-wise I take baclofen and tizanidine. (Midge K., 57 years old)
- Baclofen, medical marijuana. (Anne, 58 years old)
- Chronic, see pain doctor. (Steve, 58 years old)
- It is hard to get relief, no one wants to help. (Valerie, 58 years old)
- Mostly cramping in legs. Using Baclofen. (Anonymous, 58 years old)
- Nothing works 100%. (Diane E., 59 years old)
- Pain hasn’t been a problem for me except for the pain that came with optic neuritis at the beginning of my illness. (Leah, 59 years old)
- I just tough it out or use exercise, yoga, heat and massage. (Pat S., 59 years old)
- Do not experience pain. (Peter T., 59 years old)
- Liberation treatment for CCSVI helped solve much of the pain and cramping. (L. Stewart, over 60 years old)
- No clear method. (Jeanne, 61 years old)
- Not bad yet. (M. Davenport., 61 years old)
- Only back pain for which I take over the counter pain relief tablets. (Vivien O., 61 years old)
- Much pain with little relief with pain meds, Gabapentin, Robaxin, etc. (Carla, 62 years old)
- I have had no pain, so I don’t know. (JJ S., 62 years old)
- Ginger, turmeric, paracetamol. Ibuprofen & stronger makes you feel lousy. I do know real pain too, not just MS. (Monica, 62 years old)
- Pain has not been one of my major problems. (Douglas K, 63 years old)
- In pain daily. (Patty C., 63 years old)
- Tough it out. (Anita, 64 years old)
- Rest helps. Moving helps. Take Baclophen when it’s bad. (Carol G, 64 years old)
- Fortunately, no pain due to MS. (Francois, 64 years old)
- Legs hurt most of the time. (Margaret, 64 years old)
- A lot of pain. At times more severe than others. (Linda, 65 years old)
- I cannot get a grip on it yet! I am never pain free. I am on Fentanyl Patch and Oxycodone. (Elaine S., 66 years old)
- The pain is constant, and I rely on OTC drugs to control it. (Patricia, 66 years old)
- I have a high tolerance for pain but as time is marching on it is becoming more troublesome. (Daniel, 67 years old)
- Slight pain, no relief. (Neale, 67 years old)
- Lots of ‘natural’ relief, acupuncture. Search for something which will assist YOU. (Bev, 68 years old)
- It’s the least of my problems and I’ve dealt with by using Tylenol. (Eleanor R., 68 years old)
- Thankfully to date no pain if exercise regularly. (Jen B, 68 years old)
- Pain in both calf muscles and feet. Take gabapentin. Chinese balm at night. (Keith, 72 years old)
- I’m allergic to most pain medications so I try to deal without help. (Paulette, 72 years old)
- Just recently having leg spasms; in the past have had debilitating pain in one arm. (Elaine, 73 years old)
Multiple Sclerosis Difficulties
What are the most difficult aspects of living with MS?
- Staying focused at work. (Alyssa, 25 years old)
- That it’s not visible and you always have to explain yourself why you can’t work/play sports, etc., on the level that healthy people do. (Ginny, 30 years old)
- The uncertainty of when you will relapse and not knowing what will happen to you. (Stephanie, 30 years old)
- The unknown and unpredictable changes. (Tonie S, 30 years old)
- Accept the MS because nobody can beat this. Learning of living with MS and think more positive about myself and not only see all the things I can’t do anymore,… (Ellen K, 31 years old)
- Mobility, people not believing I’m sick because I “don’t look sick”. (Brandi L, 32 years old)
- FATIGUE. (Aubrey, 33 years old)
- Everything is harder and what you could do in the past is not the case. It stole my identity. (Joe, 34 years old)
- Your old self being taken away. (Chiara P., 37 years old)
- Having to slow down and take breaks all the time. Not being able to do as much as I’d like. (Lucy, 38 years old)
- Others falsely believing they know how to help & ignoring my claims or needs. (Ethan C., 39 years old)
- Fatigue and pain. (Allison, 40 years old)
- The unpredictableness and the side effects from meds. (Amy, 40 years old)
- Not being able to drive any more: I’m pretty much house bound except for Thursday – grocery shopping, yippy! 👱♿😆 (Saundra, 41 years old)
- Mental fog, not being able to run (my preferred form of exercise), not being light on my feet. (Phil, 40 years old)
- Never know whats going to happen from day to day. (Tracy, 43 years old)
- Every aspect of life. (Anonymous, 44 years old)
-
Trying to do things you think you can still do. (Jill, 44 years old)
- Trying to do things you think you can still do. (Jim T, 44 years old)
- Am coping ok, maybe not knowing what’s going to happen next? (Tiffany, 44 years old)
- Unpredictability, severe cognitive disabilities leave me unable to work. (Constance F., 45 years old)
- Bladder bowel fatigue getting out house work, etc. (Dianne, 45 years old)
- Daily life. Walking is difficult. (Ruth S, 45 years old)
- Unpredictability is the hardest part for me. (Spencer, 45 years old)
- Never knowing how it will affect you day to day. (Michelle, 45 years old)
- Making plans. (Richie R., 45 years old)
-
Elke dag is anders. (Jantien, 47 years old)
- Pain, fatigue, brain fog. (Jenifer R., 47 years old)
- None at this stage, maybe fear of what could happen. (Tara L., 47 years old)
- Showering, walking. (Colleen, 48 years old)
- Fatigue. (Hayley, 48 years old)
- Weakness, mobility problems, and control of emotions with my 4 teenagers. (Hayley S., 48 years old)
- The inability to be in complete control and being dependent on others when I have always been very independent. (Nancy M., 48 years old)
- Fatigue and getting others to understand, especially family. (Anonymous, 49 years old)
- Uncertainty and the knowledge that it will probably only get worse rather than better. (Christine D, 49 years old)
- Not having my obvious blood pressure issues addressed and TREATED! (Martin M., 49 years old)
- Injections for Tx. Tire easily. Not able to amb like I used to. Not able to participate in some act. With others. (Paati P., 49 years old)
- Fatigue, no work. (Luc P, 50 years old)
- Immobility. (Paul A., 50 years old)
- Loss of freedom, depending on others for everything. (Darlene, 51 years old)
- Fatigue all day, rarely solved or helped by anything, cognitive function at a fairly serious level, unable to work, taking care of home and life. (Susan A., 51 years old)
- Inconsistencies of daily symptoms. (Sherry, 51 years old)
- Your having to use my walker all the time to walk. (Vonda, 51 years old)
- Cognitive issues. (R Sansone, 52 years old)
- I live by myself and I have things around my house that need to be repaired nothing real big but need to be done my brother could do but he doesn’t even call me. (Cindy, 52 years old)
- The fatigue. (Inge D., 52 years old)
- In my personal case, it’s the ambulation. I walk mostly without help, at times I use a stick. (Anonymous, 52 years old)
- Fatigue, mobility issues, depression. (Alejandro A, 53 years old)
- You learn about handicapped accessibility to many places. (Brian B., 53 years old)
- Most of your friends just see you as lazy. (Sherri R., 53 years old)
- I can’t do what I used to do, or keep up with my friends. (Denise D., 54 years old)
- Lack of ability to do things like I once did. (Kimberly M., 55 years old)
- People not knowing what MS does to the inside of the mind and body, but having all the answers of what you should be doing. Treated differently at work by management, not in good way. Management big time reason for stress issues. HR not helpful. (Lisa R, 55 years old)
- Fatigue and pain. (Anne, 56 years old)
- Losing control of your own life some, I have always been a very independent person and now I have to accept help. (Sirpa T, 56 years old)
- Finances, uncertainty, and frustration. (Sue, 56 years old)
- Unpredictability. (Claire D. G., 57 years old)
- Loss of mobility, gradual loss of function, having to ask for help, and not being able to visit family in their homes because I’m now in a power wheelchair. (Midge K., 57 years old)
- Nobody really understands. (Anne, 58 years old)
- Standing and bladder control. (Steve, 58 years old)
- The uncertainty. (Valerie, 58 years old)
- Not being able to to everyday things. (Anonymous, 58 years old)
- Having to urinate all the time, being tired all the time, having to keep busy for the pain. (Diane E., 59 years old)
- When I was just slightly disabled, I still continued to work full time and take care of my family and I was always exhausted and in a bad mood. When I became disabled enough to stop working, my life improved significantly. (Leah, 59 years old)
- Inability to do what others my age do. (Pat S., 59 years old)
- Fatigue, incontinence, side effects of Tecfidera. (Peter T., 59 years old)
- Loss of independence, spouse, and some frightened friends. (L. Stewart, over 60 years old)
- Unable to stand at times let alone walk. (Jeanne, 61 years old)
- Lack of energy to preform simple tasks and to have the energy to enjoy spending time with grand kids. (M. Davenport, 61 years old)
- Independent living. (Vivien O., 61 years old)
- Loss of mobility. (Lois S, 62 years old)
- I can no longer stand and cook meals, vacuum, do most household chores. Needing assistance to get out of bed and pain. (Carla, 62 years old)
- Finances. (JJ S., 62 years old)
- Being reliant on others, fatigue, continence, being misunderstood. Talked down to in a wheelchair. Air travel…… (Monica, 62 years old)
- Fatigue and walking. (Dawn, 63 years old)
- Staying active, memory loss. (Douglas K, 63 years old)
- Uncertain each day how I will feel. Plans are hard to keep. (Patty C., 63 years old)
- Isolation, weak bladder, leg weakness, not being able to do things with my family, and doctors who tell me nothing will help in my lifetime. (Anita, 64 years old)
- The fatigue. (Carol G, 64 years old)
- Lack of mobility – very frustrated by this and fatigue. Bladder and bowel problems mean that when away from home have to be constantly thinking about distance and time to the washroom and interrupted sleep. (David, 64 years old)
- Always have to look for help when I have work to do – work that would be very easy to do without MS. (Francois, 64 years old)
- Shopping – can’t really do it anymore. (Margaret, 64 years old)
- Unable to walk and fatigue. (Sue L, 64 years old)
- Not ever being the same again. (Linda, 65 years old)
- Being totally independent. (Elaine S., 66 years old)
- The pain and not being as mobile as I used to be. (Patricia, 66 years old)
- Losing my independence. (Daniel, 67 years old)
- Living by yourself. (Eric, 67 years old)
- Fatigue. (Neale, 67 years old)
- Spacing out takes and noting your capacity on the day (hour). (Bev, 68 years old)
- The immobility. (Eleanor R., 68 years old)
- Inability to walk, do gardening, due to constant fatigue. inability to drive my manual car.having to be in reach of toilet at all times. (Jen B, 68 years old)
- The daily realization of the things I can no longer do, of being in a wheelchair, of being 2000 miles from my grandchildren and me not traveling well, of going outside on a cool morning and wanting to get up and walk, but not being able to, of being so dang clumsy so much of the time. (Tom H, 68 years old)
- Loss of independence. Unable to make any plans. (Keith, 72 years old)
- Pain, tiredness. (Paulette, 72 years old)
- Dealing with people who cannot “see” anything so they treat me like nothing is wrong and expect me to soldier on. (Elaine, 73 years old)
Multiple Sclerosis Advice
What encouragement/advice can you give others who have Multiple Sclerosis?
- Be positive, stay strong, we are all different so you never know how your ms will go so live life to the fullest. (Tonie S, 30 years old)
- Talking with people helps. Or write in a book. Don’t be afraid to ask for help !! (Ellen K, 31 years old)
- Manage symptoms as best you can and remember tomorrow may always be better. (Brandi L, 32 years old)
- Exercise! (Aubrey, 33 years old)
- Buckle up. (Joe, 34 years old)
- Keep fighting. (Chiara P., 37 years old)
- Talk about it. (Lucy, 38 years old)
- Become vegan & take vitamins. Pharma = death. (Ethan C., 39 years old)
- Keep laughing and try to stay positive, it’s the best medicine. (Amy, 40 years old)
- I tell everyone I come in contact with who has multiple sclerosis to try the vegan route. I think keeping those harsh chemicals out of our systems is a huge benefit. Also, talk to a counselor; this illness is hard core at times. There are people out there to help so don’t try to handle it on your own. Also, do research. I found a documentary, FORKS OVER KNIVES, and went vegan that day. So don’t give up! I’m not!👱♿💚👍 (Saundra, 41 years old)
- Follow the OMS (overcoming Multiple Sclerosis) protocol!! Cut sat fat out of your diet to effectively ZERO. Mega dose vitamin D (5-10k international units at least). Learn to meditate and reduce stress!(Phil, 40 years old)
- Meet with other people and families dealing with MS. We have our own family of MS people. You are never alone. (Tracy, 43 years old)
- Maybe one day the mystery will be solved. (Anonymous, 44 years old)
-
Learn about your MS. Something work, something’s don’t. Learn to understand your body. (Jill, 44 years old)
- Learn about your MS. Some things work, some things don’t. Learn to understand your body. (Jim T, 44 years old)
- Get plenty of sun. Pace yourself, eat well, rest well and keep moving and stay positive. (Tiffany, 44 years old)
- Keep getting up each and every morning, even if the only thing you do is go back to sleep. (Constance F, 45 years old)
- Pace yourself, keep active how ever little you can do, keep positive. (Diane, 45 years old)
- Stay positive. (Ruth S, 45 years old)
- Exercise consistently, manage vitamin D levels, attend to stress, get lot’s of rest, read a lot about the disease, don’t trust everything you read, be skeptical of medications hyped by medical doctors, and eat a diet developed to treat MS
- Depends on who I’m talking to. But always remember to keep a sense of humor and there are others who have it worse. (Michelle, 45 years old)
- Think outside the box. (Richie R., 45 years old)
- Stay strong, and ask for help when you need it. (Jenifer R., 47 years old)
- Being positive and staying healthy is the best thing you can do. (Tara L., 47 years old)
- Keep fighting. If you need to cry, cry, don’t push people away. (Colleen, 48 years old)
- Never give up. Love your family. (Hayley S., 48 years old)
- Life is funny. Humor is the best medicine. Laugh at yourself and keep smiling! (Nancy M., 48 years old)
- Find out more about possible symptoms so you can spot them, and do not get too excited about talk of possible “cures”. There aren’t any. Amazing new treatments are a very long way away even if they are shown to possibly help. Also, it might not work for your kind of ms. i.e., be realistic. (Anonymous, 49 years old)
- Stay active. Do not be afraid of overstepping your boundaries as this will help you maintain or expand your space. Keep trying. (Christine D, 49 years old)
- Diagnosed with the unproven autoimmune theory, so-called MS. Venoplasty treats the recognized medical condition CCSVI. Symptoms of so-called Multiple Sclerosis often ease or disappear when the unproven autoimmune theory of MS is treated with Venoplasty. (Martin M., 49 years old)
- Never give up! (Paati P., 49 years old)
- Great medic, Lemtrada, stem cells etc. (Luc P, 50 years old)
- Use what you can. (Paul A., 50 years old)
- It can always be worse. (Darlene, 51 years old)
- It is what it is, so we deal with it. Positivity is good medication. Maintain routines and coping skills. (Susan A., 51 years old)
- Take one day at a time 😊. (Sherry, 51 years old)
- Have patience, and pray if you believe in prayers. (Vonda, 51 years old)
- Never stop moving, and never give up. (R. Sansone, 52 years old)
- Support especially from family and communication with friends and family. (Cindy, 52 years old)
- To exercise, if at all possible! In my case I have been swimming four times a week (1 ml x 4) and use an electric bike whenever possible. Movement is the key! (Anonymous, 52 years old)
- Be active, have an open mind and work with your neurologist as a partner. (Alejandro A, 53 years old)
- Stay as active as you can, as long as you can. (Brian B., 53 years old)
- You ‘have’ MS – don’t let it HAVE you! (Sherri R., 53 years old)
- Educate yourself and those around you. (Denise D., 54 years old)
- Keep trying to do it, don’t stop. Even if it means a new way of living. (Kimberly M., 55 years old)
- Keep your sense of humor. Gets you through everything. (Lisa R, 55 years old)
- Keep busy and don’t let MS get you down. (Anne, 56 years old)
- Not to give up on your life, accept the changes and make the most of what you have. (Sirpa T., 56 years old)
- Just keep moving. (Sue, 56 years old)
- There are a lot of things you can do to help yourself: eat healthy, real food, and avoid fats and dairy. Exercise. Relax and get adequate sleep. (Claire D. G., 57 years old)
- Ask for accommodations at work, I.e. closer to bathroom, closer parking space, flexible work hours, if possible using “comp time” for medical appointments. (Midge K., 57 years old)
- Share. (Anne, 58 years old)
- Don’t give up. (Valerie, 58 years old)
- Tomorrow is another chance. (Anonymous, 58 years old)
- Keep on moving, trying, sleep when you need it. Stay cool in the summer and warm (not hot) in the winter. (Diane E., 59 years old)
- Don’t look at assistive devices like wheelchairs and walkers as the enemy. They’re there to help and if you can get past the dread they can improve your life greatly. (Leah, 59 years old)
- One day at a time. Think about the positive. (Pat S., 59 years old)
- Keep fighting share your experience. (Peter T., 59 years old)
- Be determined and have the will to try new things. Exercise as much as possible EVERY DAY to try to stay in your home. Beware of all the side effects of prescribed drugs. Stay very positive and only concentrate on the good things in life. (L. Stewart, over 60 years old)
- Chat with others, you may pick up good ideas/tips to help with issues. (Jeanne, 61 years old)
- Never give up. (M. Davenport, 61 years old)
- Exercise & modify your diet. (Vivien O., 61 years old)
- Hang in there. (Lois S, 62 years old)
- Just keep fighting! (Carla, 62 years old)
- Everyone is different.. you may not progress to total inability to care for yourself. (JJ S., 62 years old)
- Keep smiling; there are still things to enjoy even looking into a garden. Prayer. (Monica, 62 years old)
- Don’t give up. (Dawn, 63 years old)
- Keep busy, and don’t become discouraged. (Douglas K, 63 years old)
- I stay positive because they are always improving treatment. (Patty C., 63 years old)
- Don’t feel sorry for yourself, find out what works for you. e.g. I’m able to do Pilates. (Carol G, 64 years old)
- After the initial shock of the diagnosis, accept it and tailor your life to accommodate it. You can continue to work and travel. There is lots of online advice and Facebook groups and these offer advice and support. For PPMS there is very little medical support – the experts are mostly the other people who live with it. You can use this as an opportunity to do the things you dreamed of – Now. Don’t put off anything. Friends and family are wonderful. (David, 64 years old)
- You’ve got MS but don’t let MS get you! (Francois, 64 years old)
- Live each day. Try not to worry about what is next. It may never happen. (Margaret, 64 years old)
- Don’t give in, do all you can. (Sue L, 64 years old)
- Educate yourself. (Linda, 65 years old)
- Keep fighting! You can’t cure MS, but you can work to regain most obstacles. (Elaine S., 66 years old)
- Keep hoping for a cure. (Patricia, 66 years old)
- Marry a good person. (Daniel, 67 years old)
- Try exercising. (Neale, 67 years old)
- Stay positive and fight on!!! (Bev, 68 years old)
- Live with it but don’t give up. (Eleanor R., 68 years old)
- Find something you believe could help e.g.. follow a diet which will make you feel that you are doing something rather than let the MS be in control. (Jen B, 68 years old)
- Do the best you can with what you’ve got. (Tom H, 68 years old)
- Stay positive and pray for a cure. (Keith, 72 years old)
- Own it; don’t let it own you! (Elaine, 73 years old)
Multiple Sclerosis Diet and Exercise
What’s been your experience with diet and exercise?
- Sometimes, it’s hard for me to exercise because of the pain in my legs. A lot of times, I choose the easy way with food. It has been a constant battle between my will and my fatigue/pain. (Alyssa, 25 years old)
- Exercise helps, keeps you stronger than you would be without it. Diet: makes no difference. (Ginny, 30 years old)
- I don’t follow a specific diet or exercise program for MS. I try to stay active and eat healthily. (Stephanie, 30 years old)
- Pure veg juicing helped my bladder (urgency to pass urine). (Tonie S, 30 years old)
- It’s hard to be good, but with diet and exercise I feel so much better. (Aubrey, 33 years old)
- It’s important, but hard as you don’t feel well, so you can only do so much, not only in the gym, but the kitchen too. So sometimes the healthy food is not a possibility as physically you can’t make it. Lots of freezer meals and help with meal prep, cutting fruits and veggies. I lost count of all the hard to cut fruits and veggies that went to the garbage and how many times I cut myself cutting onions and other things. (Joe, 34 years old)
- I don’t do much of any. (Chiara P., 37 years old)
- I swim every week which helps me feel stronger. I tried Pilates – it helped but I didn’t enjoy it. I’ve tried to cut as much saturated fats out as possible and take vitamin d supplements. (Lucy, 38 years old)
- Clean diet, find/invent exercises. (Ethan C., 39 years old)
- Eat clean. Pay attention to how your body reacts to food. Yoga!! Do it! Check out the Wahl diet. (Amy, 40 years old)
- I’m very strict with saturated fat intake. Absolutely no meat or dairy or the plant sources of sat fat (coconut/palm oil). I’m not as strict as I should be with fried food. I love falafel or chips. But i notice I feel everything is more difficult the days after eating them, so I’m finding the strength to say no to them. Exercise is definitely helpful, find the motivation! (Phil, 40 years old)
- Going vegan and I started to exercise as much as I can. (Saundra, 41 years old)
- Try to keep busy. (Tracy, 43 years old)
- Healthy eating, move it or lose it. (Anonymous, 44 years old)
- Am getting as much sun (and vitamin d supplements in winter), eating a Mediterranean diet, walk 3 miles a day and feel really good. (Tiffany, 44 years old)
- Yoga, weights, i.e., cans, beans, bottled water, brings on fatigue but lessens after time. (Diane, 45 years old)
- I wish I was better with both. (Michelle, 45 years old)
- Very good. (Spencer, 45 years old)
- I try to eat well, but exercise is tough. (Jenifer R., 47 years old)
- Amazing. (Tara L., 47 years old)
- Water exercising helped a lot, wish I could still do it. I’m unable to dress afterwords due to needing numerous tools to get dressed. (Colleen, 48 years old)
- I’ve just started a vegan very low fat diet. Exercise does help a little with fatigue. (Hayley, 48 years old)
- Keep as supple as possible. Yoga stretching. Do as much sports and activity while you still can. Have varied high fibre diet and lots of liquids. (Hayley S., 48 years old)
- I’m healthy… I cheat once in awhile. I exercise and stretch with the assistance of my care attendants. (Nancy M., 48 years old)
- Haven’t tried diet therapy at all. Exercise generally helps with mood. Trying transverse abs physio exercises now which might help balance. (Anonymous, 49 years old)
- Life savers, preferred above disease modifying drugs. (Christine D, 49 years old)
- I avoid caffeine products, eat more green veggies. (Paati P., 49 years old)
- Both are impossible after seven years. (Paul A., 50 years old)
- I try to watch my diet due to other medical issues, but I am horrible with motivation to exercise. (Susan A., 51 years old)
- Protein fiber food. (Sherry, 51 years old)
- Exercise if you can . Don’t over do do it if you can help it. (Vonda, 51 years old)
- Only positive when you pay attention to what goes into the body, and how you exercise. (R Sansone, 52 years old)
- I have none at the moment. My weight goes up and down. Don’t exercise dye to fatigue getting overheated and overexertion. (Cindy, 52 years old)
- I eat well (no pre-prepared foods), and exercise as much as possible. (Anonymous, 52 years old)
- Exercise gives me strength, flexibility and change my mood. Diet gives health life and allows to manage some symptoms. (Alejandro A, 53 years old)
- I eat lots of super hot peppers. That has helped keep my weight down. Other than that, my diet hasn’t really changed. As for exercise, I try to do what I can. (Brian B., 53 years old)
- Do the best that you can. (Sherri R., 53 years old)
- Neither really seem to help, depends on what day it is. (Denise D., 54 years old)
- I hate both, I tire so quickly. (Kimberly M., 55 years old)
- Weight management. Keep the numbers down on the scale and you will do better. (Lisa R, 55 years old)
- Not great. (Anne, 56 years old)
- I haven’t really tried any special diets but am now considering that. Exercise is crucial. (Sirpa T, 56 years old)
- Exercise is key along with a healthy diet. (Sue, 56 years old)
- Excellent. Following the “Overcoming MS” program has been responsible for reserving 80% of my symptoms. (Claire D. G., 57 years old)
- Diet is challenging but trying to eat healthier is easier sometimes than exercise. Depending on your mobility status, overheating, spasticity, and fatigue might limit your ability to exercise. (Midge K., 57 years old)
- Discovered lactose intolerance, can’t really exercise anymore. (Anne, 58 years old)
- Amazing relief diet helps. (Steve, 58 years old)
- You have to keep active, or you lose so much. (Valerie, 58 years old)
- Got to move or you won’t. No lollipops (sugar) – not your friend. (Diane, 59 years old)
- There is zero evidence that any diet will help with MS, but everyone will try to tell you otherwise. Exercise helps because if you are stronger you can get through your day with less exertion and therefore be happier. (Leah, 59 years old)
- Exercise and yoga help a lot with pain and mood. I also have Celiac and eat a gluten free diet. I try to eat only organic foods and stay away from anything processed. Maybe it helps with my MS, but if not it keeps me healthy. (Pat S., 59 years old)
- Do not over exercise and eat a well balanced diet. (Peter T., 59 years old)
- Always eat in moderation. I exercise every day each time I use the washroom. (L. Stewart, over 60 years old)
- Difficulty exercising makes it difficult to maintain weight. (Jeanne, 61 years old)
- No luck there – love to eat and not enough energy to work out. (M. Davenport, 61 years old)
- I believe that both have enabled me to stay on my feet & not resort to a wheelchair. (Vivien O., 61 years old)
- Nil on nourishment due to Gastroparesis, just chair exercises anymore. (Carla, 62 years old)
- I haven’t wanted to exercise. The less fat in my diet, the better. (JJ S., 62 years old)
- More energy, less bloating, no processed food. Terry Wahls / Paleo diet. (Monica, 62 years old)
- I eat a low fat diet. (Dawn, 63 years old)
- A low fat, heart diet may have helped I am sure that exercise would help. (Douglas K, 63 years old)
- Walk when you can, it helps. (Patty C., 63 years old)
- Diet does nothing. I’m too weak to exercise. (Anita, 64 years old)
- Healthy is best for sure. Tried no gluten and dairy , doesn’t seem to make a difference. But I try not to eat white foods. (Carol G, 64 years old)
- I have been on the Overcoming MS diet (Prof Jelinek) – vegan plus seafood for over a year (started soon after diagnosis) and have been fairly stable since. I take Vitamin D and B12 and have recently started Biotin. I try and get half an hour exercise every day (walk half mile) and do exercises as recommended by a Physiotherapist. (David, 64 years old)
- Diets are too complicated. Exercise make a lot of difference and is good. (Francois, 64 years old)
- No diet and exercise is keeping up my house. (Margaret, 64 years old)
- Regular exercise is too painful, water aerobics is great. (Linda, 65 years old)
- Am doing the 500 calories twice a week. I have also lost 50lbs recently. I can get up better when I fall. (Elaine S., 66 years old)
- Healthy diet and regular exercise helps to maintain strong aspects. (Patricia, 66 years old)
- None, I can’t exercise and my wife tries to watch what I eat, but what else do I have? (Daniel, 67 years old)
- Keep weight manageable. (Neale, 67 years old)
- Eat healthy, exercise daily – whatever you can manage. (Bev, 68 years old)
- Can’t say that I have tried any dietary regiments. Too tired for exercise. (Eleanor R., 68 years old)
- I feel diet can help and exercise certainly does. (Jen B, 68 years old)
- While exercise helps in the long run, in the short run it leaves me extremely tired and much stiffer than when I started. (Tom H, 68 years old)
- Tried most diets but can’t say that they helped. Had physio for many years. (Keith, 72 years old)
- Buckle down and do not dwell on your health. (Paulette, 72 years old)
- Not great on keeping up with any particular diet; need to get back to exercise- when I did yoga I felt so much better. Took time out for spinal surgery because of herniated disc…must get back to exercising! (Elaine, 73 years old)
Multiple Sclerosis Treatments
What’s been your experience with treatments (drugs, self-care, infusion, etc.)?
- Gilenya, currently on Tysabri. (Alyssa, 25 years old)
- Some oral meds cause severe diarrhea. (Ginny, 30 years old)
- I take copaxone 40mg-3x a week. I’m very happy with it and it seems to be working so far. No side effects and it’s very safe. I’ve also learned to meditate and work on my relaxation skills. I think working on lowering my anxiety has helped my MS a lot. (Stephanie, 30 years old)
- Avonex working well for me do far. (Tonie S, 30 years old)
- In the beginning I get Rebif, in January 2016 I get the Lemtrada treatment ( 5 days, first round) in January 2017 I get a second round of 3 days Lemtrada. (Ellen K, 31 years old)
- On my 2nd DMD and it seems to be working well. (Brandi L, 32 years old)
- I’ve had Sodio Medrol infusions, they are a miracle worker at shortening flareups. I’m on Avonex. I hate doing injections every week, but it definitely works. (Aubrey, 33 years old)
- I had the worst neurologist- he told me MS doesn’t cause pain. I had injection reaction. When I called my neurologist he didn’t want to see me- he actually sent me to a dermatologist as I mentioned my skin flushing. I spent two years asking both a dumb neurologist and a family doctor for a parking plaque. I saw a new neurologist this week as it turns out I left with the paperwork for handicapped parking and a prescription for pain management and we are changing dmts as I got 30 lesions in 3 years, plus the site reaction. No brainer for a new neurologist, but I had been begging the old dummy as I didn’t want needles anymore, plus I was afraid since the reaction, to poke myself. He never once mentioned new lesions. What’s the point of getting an MRI if he won’t read it? (Joe, 34 years old)
- I’ve been on Copaxone and it’s working pretty good for me. (Chiara P., 37 years old)
- I want Acupuncture & amp; massage. (Ethan C., 39 years old)
- Betaseron, Copaxone and now Tysabri. (Allison, 40 years old)
- I spent 11 years on Copaxone, I just switched to Tecfidera. It’s been a rough start, but I’m told it will get better after 2-4 months. Hang in there. (Amy, 40 years old)
- I was on Copaxone but it put me in the hospital at least twice a year till i found FORKS OVER KNIVES. Now, I’ve been off all my multiple sclerosis drugs going on 6 years now. My Doctor said I could be dead in 2 years. 13 years later I’m not dead! (Saundra, 41 years old)
- Took Rebif but had a very life threatening illness happen from it. Started on Copaxone and doing well. (Tracy, 43 years old)
- Best to mix traditional and non-traditional. (Anonymous, 44 years old)
-
Something work, some don’t. (Jill, 44 years old)
- Currently on Tecfidera. Formerly on Tysabri. Last relapse was 5 years ago. (Constance F, 45 years old)
- Weekly injections enabled me to work for as long as I could and they worked well at the start. I had other drugs for leg spasms, etc so I could sleep. (Diane, 45 years old)
- I don’t treat my ms. But I do the symptoms. (Michelle, 45 years old)
- I have no experience with those so-called treatments. (Spencer, 45 years old)
- No drugs. It’s a never ending cycle. (Richie R., 45 years old)
-
Ik gebruik CBD olie en echinaforce en cinuforce. (Jantien, 47 years old)
- I have tried four different Dmds with little results, Tysabri worked like a dream but tested svc positive. (Jenifer R., 47 years old)
- Shocking – had to come off them and lets face it effeciency rates are pretty ordinary. (Tara L., 47 years old)
- I think the drugs I have done have helped slow progression of my disease. (Colleen, 48 years old)
- I was on Bacolfen for years, it didn’t help and just made my muscles weak. I don’t take any drugs just vitamins and minerals. (Hayley, 48 years old)
- Dr. Richter’s herbal tea for first constipation is excellent. Cannabis oil for spasticity. (Hayley S., 48 years old)
- Medication includes Solumedrol, Betaseron, Copaxone 20 mg daily, Mitoxantrone, Methotrexate, Gilenya, Tysabri, Tecfidera, Copaxone 40mg 3Xwk, high dose Biotin. Intrathecal Baclofen Pump, Clonazepam, Baclofen, Requip. (Nancy M., 48 years old)
- Had steroids once. No great benefit. (Anonymous, 49 years old)
- Some studies show that pharmaceuticals which supposedly treat MS are only 20-40% effective, do not slow progression of the disease, and have corrosive and harsh side effects. (Martin M., 49 years old)
- I used just Prednisone in the early years. Started Avonex 12 years ago, built up neutralizing antibodies changed to Copaxone, used Solu Medrol infusion at times, then started Tecfidera pill when it first came out almost 4 years ago and no exacerbations since! (Paati P., 49 years old)
- I was on Copaxone for 16 year now on Lemtrada 4,5 months post first round. (Luc P, 50 years old)
- Nil. (Paul A., 50 years old)
- I was DX in 1992…before medications were available. I’ve been through all of the traditional injections and steroids when needed. I currently receive monthly infusions of Tysabi and tolerate it well. (Susan A., 51 years old)
- It’s different every day. (Sherry, 51 years old)
- No drugs. I do vape cannabis regularly, but I find that supplementation, diet, and exercise do far more for me than drugs. (R Sansone, 52 years old)
- Gilenya so far. (Cindy, 52 years old)
- Hard to tell if the disease-modifying drugs kept the disease at bay, or a combination of exercise and good eating habits. (Anonymous, 52 years old)
- I use Baclofen and Fampridine to manage spasticity and speed of walk. They offer some help. (Alejandro A, 53 years old)
- In 19 years I have done quite a few treatments and have done many different drugs. (Brian B., 53 years old)
- Give the injections a try – had a number of different injections (15 years total). I did have to switch to Tecfidera. (Sherri R., 53 years old)
- I’m on Copaxone. Seems to work for me. I just hate the lumps. (Denise D., 54 years old)
- I was on Avonex then Pledgey. I was worse on them than off. (Kimberly M., 55 years old)
- Had two infusions and both times ended up with blood clots. (Lisa R, 55 years old)
- Rebif for 10 years while I was still RR and then 4 years of Azamun and lately no DMD’s. Started high dose biotin 3 months ago and have high hopes for that stopping or slowing progression. (Sirpa T, 56 years old)
- When I was diagnosed in 1985, there were no treatments yet, but I tried multi-vitamins, prokarin, b-stings and many herbal supplements. (Sue, 56 years old)
- I have never needed DMDs or infusions. I took Baclofen for 18 months to help with spasms. Once my yoga practice got established, I was able to stop taking Baclofen. (Claire D. G., 57 years old)
- The medications that I was on first did not slow the progression of my MS (Avonex, Betaseron, Copaxone) and I was relapsing frequently. More aggressive meds were tried next ( Methotrexate, Novantrone, Tysabri). When my physical function became worse, I went from a cane to a scooter, then walker plus scooter, and finally to a power wheelchair. I worked for 20 years after my diagnosis. (Midge K., 57 years old)
- Now in assisted living… (Anne, 58 years old)
- Side effects are awful. (Valerie, 58 years old)
- Failed with three DMD, currently three months post Lemtrada. (Anonymous, 58 years old)
- Haven’t found one that works for me. (Diane E., 59 years old)
- I was diagnosed in 1984, before the drugs were invented, and was slow to take the advice to start once they came on the market, so I went 16 years without treatment. I greatly regret delaying treatment, because it’s likely I’d be better off if I had started sooner. (Leah, 59 years old)
- I was on interferon injections for 10 years but had to stop because of side effects. (Pat S., 59 years old)
- Generally positive but the side effects of treatment can get you down. (Peter T., 59 years old)
- I used Avonex for 9 years and was sick all the time. I had Liberation in 2010 with a ballooning and large stint (the key) and it stopped progression. I now do NOT need to use prescription drugs any more. (L. Stewart, over 60 years old)
- On a drug trial at the moment but other than that, I have not been offered any drugs, etc. (Jeanne, 61 years old)
- Aubagio, Tecfidera. (M. Davenport, 61 years old)
- I do not take disease modifying drugs. (Vivien O., 61 years old)
- Tecfidera seems to work for me. Steroids do nothing. (Lois S, 62 years old)
- EXPENSIVE when I have no insurance! (Carla, 62 years old)
- The side effects were horrendous from Interferon, so I stopped. Plus they were only “treatments”.. I won’t take anything else until it is a cure. (JJ S., 62 years old)
- Best without!! Just diet, self care. Tried a Tysabri trial, made me feel ill. (Monica, 62 years old)
- I was on Rebif for 6 yrs, didn’t help, I don’ t think. I had a Venoplasty 5 years ago which I think stopped the progression. (Dawn, 63 years old)
- Have done Betaseron and Avonex and I believe they helped delay any further episodes. (Douglas K, 63 years old)
- Started in double blind study, Copaxone 10+ Tysabri ,Gilenya. (Patty C., 63 years old)
- I’ve tried lots of things. Nothing helped except CCSVI which was dramatic, but only lasted 3 months during which time I was starting to walk on my own. Tried Copaxone, Rebif, acupuncture, vitamins and supplements, hypnosis, meditation, diet, Botox, G Push , steroids, baclofan, PT, massage. I just get worse every year. (Anita, 64 years old)
- Take Topiramate regularly for restlessness at night. Baclophen when needed. Tried Lyrica but gained too much weight. (Carol G, 64 years old) (David, 64 years old)
- Have had chemo every 3 months for 18 months, and Ampyra. (Francois, 64 years old)
- Used Avonex for flu symptoms every Monday nighta for 10 years. Now on Abaugio.(Margaret, 64 years old)
- Low Dose Naltrexone, Biotin. (Sue L, 64 years old)
- I thought Betaseron injections we’re going to kill me. I’m on Gilenya now & doing much better. (Linda, 65 years old)
- On Tecfidera. It works best for me. Tysabri was good, but I tested positive for JC virus. (Elaine S., 66 years old)
- I rely on all of them which have helped whenever I would have a relapse. (Patricia, 66 years old)
- Steroid infusion is awful. I take Baclofen, Neurontin, Vitamin D (50,000 units 1 per week), Vitamin B12, and now 300mg of Biotin a day. (Daniel, 67 years old)
- Fampyra and Biotin help. (Neale, 67 years old)
- No dmds. Talk to others, sometimes something they do may assist you to manage better. (Bev, 68 years old)
- Initial diagnosis suggested drugs wouldn’t do much – once in progressive state there are no drugs – CCSVI provided temporary relief but after 9 months symptoms returned. I do take variety of vitamins. (Eleanor R., 68 years old)
- I have been on Baclifen – the pump was implanted in 2007. I don’t how much it helps. I’ve never had a moment when I thought, “Boy, this stuff is great!” Then again, I don’t know how I’d be doing without it. (Tom H, 68 years old)
- All end up not helping after a certain time length. (Paulette, 72 years old)
- There were no drugs when I was first diagnosed; have been on Avonex for 18 years, with a short break for Tecfidera and Plegridy; neither worked for various reasons and returned to Avonex. (Elaine, 73 years old)
Multiple Sclerosis Recommendations
Anything you would recommend for someone with Multiple Sclerosis?
- Do your research and choose the best treatment for your situation. Don’t get bullied in to anything by your doctor. (Alyssa, 25 years old)
- Lemtrada. (Ellen K, 31 years old)
- Never give up (Tonie S, 30 years old)
- Stay positive. (Brandi L, 32 years old)
- Exercise, yoga, massages. (Aubrey, 33 years old)
- Get a good neurologist. Don’t do a community neurologist, go to an MS clinic. (Joe, 34 years old)
- Do a lot of research. (Chiara P., 37 years old)
- Slow deep breathing, cannabis, meditation, peace & quiet. (Ethan C., 39 years old)
- Get on Tysabri! (Allison, 40 years old)
- Stay light, stay positive, laugh as much as possible, don’t spend spoons on negative people, find a good support circle, talk about MS and your experience with it… Be your own advocate!! (Amy, 40 years old)
- OMS!! (overcoming Multiple Sclerosis) Cut sat fat out of your diet to effectively ZERO. Mega dose vitamin D (5-10k international units at least). Learn to meditate and reduce stress! (Phil, 40 years old)
- Again, going vegan was the best thing I ever did. (Saundra, 41 years old)
- Meet with other people with MS. Make sure you find a neuro who specializes and concentrates on MS. (Tracy, 43 years old)
- D Mannose for bladder. (Anonymous, 44 years old)
-
Don’t think you can still do everything. (Jill, 44 years old)
- Keep as fit as you can, it helps on the off days. (Tiffany, 44 years old)
- Take MS medication. They slow progression in most patients. (Constance F, 45 years old)
- Eat well, stay in contact with friends and groups to keep your mind active. (Diane, 45 years old)
- Hsct. (Ruth S, 45 years old)
- Do what’s right for you. Ask questions. Doctors are humans not gods. Ask for help if you need it. Don’t let it take over your life then get upset when nobody wants to be around you. (Michelle, 45 years old)
- Exercise consistently, manage vitamin D levels, attend to stress, get lot’s of rest, read a lot about the disease, don’t trust everything you read, be skeptical of medications hyped by medical doctors, and eat a diet developed to treat MS. (Spencer, 45 years old)
- Be positive. (Richie R., 45 years old)
- Do your research! The more you know, the better you’ll be able to handle different changes. (Jenifer R., 47 years old)
- Wahls protocol. (Tara L., 47 years old)
- Stay positive. (Colleen, 48 years old)
- Never give up or give in to it. (Edel M, 48 years old)
- Cut out dairy and saturated fats. (Hayley, 48 years old)
- Deep muscle tonic massage as often as possible to help with movement circulation, flexibility, spasticity, stress, and sleep problems. Don’t get too hot or cold. Don’t go longer than 2 hours without eating; seems to make things worse. (Hayley S., 48 years old)
- Find a discussion group and have other interests. (Anonymous, 49 years old)
- Listen to your body, be nice to yourself and stretch your boundaries. (Christine D, 49 years old)
- Multiple Stenosis Society. (Martin M., 49 years old)
- Don’t be afraid to ask for help – ask questions. (Paati P., 49 years old)
- Take great medicine early. (Luc P, 50 years old)
- Join a club. Use your MS nurse. (Paul A., 50 years old)
- Don’t lose HOPE. (Darlene, 51 years old)
- Keep strong, and maintain a strong support system. (Susan A., 51 years old)
- Sleep, exercise, eat well, and have lots of vitamins. (Sherry, 51 years old)
- Get a good doctor. People with ms on Facebook help too. (Vonda, 51 years old)
- It’s your body to experiment with. Everyone is different so find the balance that’s right for you. Educate yourself. (R Sansone, 52 years old)
- Take care of yourself because there might be no one else to help. (Cindy, 52 years old)
- Start an exercise class (yoga, swimming, anything to keep your muscles moving). (Anonymous, 52 years old)
- Change your neurologist if he/she doesn’t satisfy you, talk with other patients and be alert about the news and CAMS. (Alejandro A, 53 years old)
- Talk with people who actually LIVE with it…not just one person—many! (Sherri R., 53 years old)
- Support groups. (Kimberly M., 55 years old)
- Have a wonderful sense of humor. It will help you ALWAYS. (Lisa R, 55 years old)
- Set goals and work towards them. (Anne, 56 years old)
- Never give up. (Sirpa T, 56 years old)
- Stay positive, eat healthy, don’t smoke, drink very little alcohol, and keep moving. (Sue, 56 years old)
- Read Dr. Jelinek’s book: Overcoming MS. (Claire D. G., 57 years old)
- Knowledge is power. While anecdotal information found on the internet can be helpful, it’s important to work with your MS care team (MD, PT, OT, ST, dietician if needed, psychologist if needed, urologist, ophthalmologist), and local MS Society. (Midge K., 57 years old)
- Not to lose your independence. (Anne, 58 years old)
- Go outside to breath fresh air. (Steve, 58 years old)
- Research everything. (Valerie, 58 years old)
- Find others with MS, for they truly get it. (Anonymous, 58 years old)
- Give it a try, maybe it’ll work. (Diane E., 59 years old)
- Don’t try to be superman/woman. (Leah, 59 years old)
- Listen to your body and what it’s telling you. (Pat S., 59 years old)
- Try new things and avoid prescription drugs! (L. Stewart, over 60 years old)
- Get really good shoes with memory foam inserts. (M. Davenport, 61 years old)
- Join an MS center where you can talk to others about their experience. (Vivien O., 61 years old)
- Find a good MS neuro specialist! (Carla, 62 years old)
- Respond to your body, no one knows you as well as yourself. (JJ S., 62 years old)
- Rest if you need to but exercise when able. (Jeanne, 61 years old)
- Prayer. (Monica, 62 years old)
- Eat properly, take vitamin D3 and exercise as much as you can, but don’t over do any activity. (Dawn, 63 years old)
- Keep up with the new info and start on Rx regime. (Douglas K, 63 years old)
- Talk to other people with MS. (Patty C., 63 years old)
- A spiritual life. As much movement as you can handle. Get out of the house. (Carol G, 64 years old)
- I believe in keeping as healthy as possible via diet and exercise- read all you can online or get a loved one to help you out with this and remember there is still a lot of living you can do. Take control of your own health. (David, 64 years old)
- Stay active at a 100% of whatever MS leaves you with. (Francois, 64 years old)
- SOT Chiropractor, Low Dose Naltrexon and oxygen. (Sue L, 64 years old)
- It was extremely difficult for me to accept my diagnosis. Please accept it & take care of yourself. (Linda, 65 years old)
- Make sure you get early diagnosis. Symptoms are not a diagnosis. Find a local MS office and get involved with seminars and others with MS. (Elaine S., 66 years old)
- Stay positive, and maintain a sense of humor. (Patricia, 66 years old)
- Do your own research and make your doctor listen to your symptoms. They will not be like anyone else with MS. (Daniel, 67 years old)
- Exercise. Lose weight. Try Fampyra and Biotin. (Neale, 67 years old)
- Stay positive it is not always a downward slope. (Bev, 68 years old)
- Ignore your neurologist because he/she has no clue of what causes MS so how can he/she be expected to provide a cure – research the disease, see how blood flow should be strongly considered and try CCSVI, it certainly won’t cause any more damage than what you already have. (Eleanor R., 68 years old)
- Join an active MS group for support and exchange of experiences. (Jen B, 68 years old)
- If they are in northeast Ohio, go to the Cleveland Clinic’s Mellin Center. I went there from 2006 til 2012, when I moved to Georgia. The doctors and staff at the Mellin Center are outstanding, they work with you and are so very helpful and caring. Haven’t found anything that compares down here. (Tom H, 68 years old)
- Be positive, stay active, keep your mind on something else. Get a hobby. (Paulette, 72 years old)
- Attitude is half the battle! (Elaine, 73 years old)
Multiple Sclerosis Resources
What specific resources have you found most helpful?
- Message boards and Facebook support groups. (Alyssa, 25 years old)
- Neuro-biological information about the brain and m.s. has made me understand better what m.s. does to the brain and what effects it can have on cognition, emotion and behavior. (Ginny, 30 years old)
- Support from loved ones/neurologist physio/OT etc (Tonie S, 30 years old)
- NMSS, MSF, MSAA. (Brandi L, 32 years old)
- The drug company helps to pay for my meds, since my insurance sucks. (Aubrey, 33 years old)
- Belonging to a multiple sclerosis group. (Chiara P., 37 years old)
- The MS service where I live is great. My MS nurse is easily contactable and helpful. The MS society, MS trust websites and Facebook have helped too. (Lucy, 38 years old)
- None. Quality housing would be great. (Ethan C., 39 years old)
- nmss.org (http://www.nationalmssociety.org/). (Allison, 40 years old)
- If you’re in Maryland, check out the MS center at UMD. Daniel Harrison is an amazing neurologist. (Amy, 40 years old)
- The book Overcoming Multiple Sclerosis by Prof. George Jelinek. (Phil, 40 years old)
- “FORKS OVER KNIVES” documentary. (Saundra, 41 years old)
- Meetings where you meet new Drs. (Tracy, 43 years old)
- Online groups. (Anonymous, 44 years old)
- Ms society website, George Jelinek’ book “Overcoming MS” (Tiffany, 44 years old)
- Facebook pages for MS and chronic illness, my neurologist.(Constance F, 45 years old)
- MS & Work, MS nurse, physio. (Diane, 45 years old)
- MS society MSAA library internet. (Michelle, 45 years old)
- PubMed articles + books by various authors (I’ve read about a dozen books on the topic to date). (Spencer, 45 years old)
- MS society. (Jenifer R., 47 years old)
- Wahls protocol, Overcoming MS, and Dr. Ashton Embry. (Tara L., 47 years old)
- My neurologist. (Colleen, 48 years old)
- My walker and wheelchair. (Edel M, 48 years old)
- Facebook. (Hayley, 48 years old)
- The Internet. (Hayley S., 48 years old)
- Certain disability related benefits, based on PIP. MS nurse was very helpful as was a neurologist when I was trying to get medical retirement from work. Work occupational health was also useful then. (Anonymous, 49 years old)
- MMSA NMS. (Paati P., 49 years old)
- Internet websites, newsletters. (Christine D, 49 years old)
- Neuro and Lemtrada. (Luc P, 50 years old)
- Elbow crutch and a wheelchair. (Paul A., 50 years old)
- National websites and other sites that offer tools to keep up with things. (Susan A., 51 years old)
- Biotin Facebook site. (Sherry, 51 years old)
- Fortunately I’m privy to many medical journals. The internet, experiments on my own body/physiology, my neurologist, and an open mind have all contributed. (R Sansone, 52 years old)
- I am now new to Biotin (MS 1003) and it appears to be a good solution. (Anonymous, 52 years old)
- Exercise. (Alejandro A, 53 years old)
- There are several good Facebook MS groups who can help with physical and mental support. (Brian B., 53 years old)
- Social Media. (Sherri R., 53 years old)
- Facebook sites!!! (Kimberly M., 55 years old)
- Haven’t found one yet. (Lisa R, 55 years old)
- MS NURSE, Internet forums. (Anne, 56 years old)
- Finding information online. (Sirpa T, 56 years old)
- Yoga and relaxation. (Sue, 56 years old)
- Overcoming MS book, OMS website, Dr. Swank’s program. (Claire D. G., 57 years old)
- NMSS, MSF, MS Facebook groups. (Midge K., 57 years old)
- Chat groups, support groups. (Anne, 58 years old)
- Learn what you can. You never know what’s important. (Diane E., 59 years old)
- The informational seminars sponsored by the drug companies. (Leah, 59 years old)
- Reading books, MS magazines, social media, drop in centers. (Peter T., 59 years old)
- People with MS and friends. Certainly, doctors and the MS society are no help. (L. Stewart, over 60 years old)
- MS Trust booklets, MS Nurse. (Jeanne, 61 years old)
- Internet – connect with people with MS. (M. Davenport, 61 years old)
- Exercising in a gym & online dietary advice. The internet is a great resource. (Vivien O., 61 years old)
- Wheelchair kamikaze. (Lois S, 62 years old)
- FB groups. (Carla, 62 years old)
- MS Magazine. MS Nurse. (Monica, 62 years old)
- Dr. Swank Facebook. (Dawn, 63 years old)
- MS support group. (Douglas K, 63 years old)
- MS Society. (Patty C., 63 years old)
- Facebook sites. (Anita, 64 years old)
- Overcoming Multiple Sclerosis website and Biotin for PPMS Facebook page as well as multiple online MS charities, including local group. (David, 64 years old)
- MSCS and 1000 Facebook friends. (Francois, 64 years old)
- Medication help groups. (Margaret, 64 years old)
- UBC MS Clinic. Online FB sites. My doc. (Carol G, 64 years old)
- Having a great neurologist with great staff. (Linda, 65 years old)
- MS Society (local), NMSS, magazines on neurology. (Elaine S., 66 years old)
- Nothing in particular. (Patricia, 66 years old)
- My wife. (Daniel, 67 years old)
- FB pages. (Neale, 67 years old)
- Online support is amazing. Keep looking until your find someone, medical or Naturopathic, who will listen to you. (Bev, 68 years old)
- Internet. (Eleanor R., 68 years old)
- Subscribe to MS UK New Pathways magazine for positive news and join the MS Society. (Jen B, 68 years old)
- MS Society has lots of information and programs; take advantage of them. (Elaine, 73 years old)