Less Common Multiple Sclerosis Symptoms

Dealing with multiple sclerosis (MS) is no walk in the park, but there are great examples and inspiring stories about people who never give up fighting.

For example, meet Ian Franks, an MS News Today contributing blogger who wants you to join him in “the race to beat MS.”

This National MS Society video features a discussion with Dr. Stephen Krieger about less common symptoms of multiple sclerosis.

Also, see the new therapy assessment tool that Microsoft developed in collaboration with Novartis.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

19 comments

  1. JUDE LANGE says:

    I WAS DIAGNOSED IN 2014 WITH MS AND MY MOST ANNOYING SYMPTOMS SO FAR ARE PHANTOSMIA AND PAROSMIA. MY NEUROLOGIST WHO SPECIALIZES IN MS HAS NO OTHER PATIENTS WITH THESE SYMPTOMS BUT THEY SEEMED TO BE MORE PRONOUNCED DURING MY LAST RELAPSE. ANY THOUGHTS?

    • Robby says:

      No WAY!! I think I have the SAME THING! I’m 6’2″ and have always weighed between 210 to 220lbs. when I was diagnosed in September 2012 ( I got MS for my 34th birthday), I lost all the way down to 165 lbs.! Do you have trouble “Eating” things? My wife asks me EVERY SINGLE DAY what I’m cooking for dinner (STAY-HOME-DAD-2 yr. And 4 mo. old boys) and its ALWAYS the SAME ANSWER, “I don’t KNOW”! If i ever know what I’d like to eat, I don’t want it anymore after the first couple bites, and then it’s like I have to FORCE MYSELF to eat. I can’t remember (which is nothing NEW) if I’ve smelled “BAD” things but I have smelled different “Things” when they WEREN’T there.

      • Jjohnston says:

        Yeah me too! No one believes me when I don’t eat enough or don’t want something I used o love. Nothing is as good as it used to be and I’ve had a lot of people tell me not to eat dairy when I grew up with milk everyday and I really miss it! I am a very slow eater worse than before and everyone bugs me about it. Waiters when I go out family everyday, but I can’t eat any faster. I’ve tried. Because nothing tastes the same makes it worse, so glad I’m not alone in this. Thank you for your story.

        • Jjohnston says:

          I also lost about fifty pounds in the first year after diagnosed. So much I was almost in the hospital but no doctor said it had anything to do with MS. I was never trying to lose weight.

    • Robby says:

      Wow! You too! I’m a stay at home Dad to my 2 year and 4 month old boys, and my wife asks me each day what we’re having for dinner. My answer is ALWAYS the same, “I DO NOT KNOW”. I never really have a “TASTE” for anything, and if I do, after the first bite or two its like I have to FORCE MYSELF to eat. I’m 6’2″ and always bounced between 210 to 220 lbs. but when I got MS for my 34th birthday September 2012, I dropped all the way to 165 lbs ! I don’t remember smelling anything BAD, but I do catch whiff’s of different things around that aren’t necessarily there. Is this something like what your talking about Jude?

  2. Kathy Hutson says:

    I am 55 years old and have had MS for 8 years. I used to love to eat, but now its like you said. I don’t ever crave anything and then after the first few bites, I have to force myself to eat. I’m glad my kid is older and can make or order his own food! No bad smells, I just am not “hungry”.

    • Robby says:

      It’s crazy miss Cathy! I go to a doctor who specializes in MS and she claims that she has never heard of anyone else having this problem. I think that there are probably a LOT MORE people who deal with this than we may think. Somebody needs to do some RESEARCH!!! HAHAHAHA!!

      • Jjohnston says:

        Yes Robby I have been told the same thing from my neurologist. Someone really needs to look into this problem or we may all die of starvation. I am hungry all the time but I don’t want to eat anything. I eat very small meals but I can’t eat for too long before I’m sick of it!!

  3. Olive Bird says:

    I have had m.s. for 37 years now, and I find over the years all sorts of odd thing have happened that I cannot explain, but blame the m.s. My mother hsd m.s. and lived till she was 96. she was waiting for a cure back then, I have been wating for 37 years, and STILL they do not know what the cause us, so I guess I will die also waiting !!!!

    • Shirley says:

      Yup … we have no chance until these researchers find the cause of MS. Until then we are guinea pigs for them. They have found a life long job because of us. Who doesn’t want that? Grrrrrrrr

  4. Nina Khehra says:

    I’ve had MS for 31 years this year, and I also don’t feel like eating. I am definitely not trying to lose weight, it’s just seems to be a hassle to eat. SO, I can relate!

  5. Philip Longford says:

    At least this is a symptom I do not have!! Always hungry. Am following the Wahls Protocol Diet (sort of), but life is too short, not to have the occasional Big Mac, or a barbecued rib-eye, washed down with a few cold beers! MS is a bit of a bugger. No point making it even worse, by avoiding the little treats that make living, worthwhile!

  6. Robby says:

    Man, I can just IMAGINE how awesome you must have it Philip! Beer? What if one of the kids fall and need to get to the ER? Uhmm, no. Barbecued Ribeye? Ahhhh, yes. The only cut I ever USED TO eat. Got kids now though, and unfortunately they’ve gotta eat to. Uhmm, no ribeyes tonight, better grab those “Flank Steaks” over there, cause they’re thin enough to microwave! HAHAHAHA HAHAHAHA!! I’m just kidding really Philip. Seriously, not to turn this discussion of “Eating” into something else, but I know it would be EXTREMELY nice to purchase “LEGALLY” certain things that are WELL KNOWN to give you an “Appetite”. But, we hafta do what we hafta do y’all, cause we’ve ALL GOTTA EAT!!! And darn it, I LOVED EATING before MS!!

  7. jane hazell says:

    Hi,
    I think this is an unusual ms symptom.
    When it is hot I cannot stop sweating on my face and neck, neuro say’s it is a nerve on a sweat gland. Please let me know if anyone else has this embarrising problem.

    Thanks x

    • Beverly J Long says:

      Hi
      I am in the process of being diagnosed with MS have had symptoms for years now. I too sweat bullets if I get even the little bit warm. I’ve never sweated like this before. It pours off my face. It’s so embarrassing. Also have a lot of deep right ear pain which got me to the Neuro in the first place. I have so many symptoms and because of Health Ins. I have a doc I can’t understand most of what he is saying because of his dialect and does not want to answer any questions and if you ask the same question again because you didn’t understand what he said he gets upset and tells you he has already answered that question. So confused and frustrated with all this..
      Thanks for listening

      Beverly Long

  8. Robby says:

    Wow! That is quite interesting Miss Jane. Because I played sports in HS, and you may have seen a drop of sweat on me. I had never really sweat much at all. After MS, working my way back to having no tolerancy to heat, and CURRENTLY I sweat RAGING RIVERS ALL OVER!! Shirts become SOAKED on me now! So yes, I would definitely say that I too have the same problem. However, I’ve never really thought about it or asked my Doc, but I can promise you I WILL! HAHAHAHA!! I wanna know now! You’ve put me on a mission Miss Jane!!

  9. Maribeth says:

    I’ve had MS since I was in high school.(in the 80’s)
    I find that I have to eat several little meals all day. Keeps away the weak spells.
    I’ve always been a very slow eater. It just doesn’t work if I try to speed up. My “swallower” just shuts down. Sometimes if I swallow something too fast, I’ll get a lot of pain, and I’ll just have to wait until it passes. I didn’t realize this could all be part of the MS.

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