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NEUROPATHY AND MS
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Anon_146182 posted:
Do any of you have neuropathy and ms. Are the two every related in any way. I have symptoms of ms and also have diabetes and now am having neuropathy with nerve dylemization disease. does anyone else have these things going on.

I am still being tested for ms, I have two brain lesions and a multitude of symptoms.
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JamesinCNY responded:
I have neuropathy that was a result of Stevens-Johnson Syndrome, but it has progressed even after the flare from SJS was treated. I was taking Lyrica for it and it was helping a lot but due to the damage from the SJS it also makes me swell up like a balloon. Cymbalta is what I am currently taking but it does not work as good as Lyrica, the burning on my face/head is back and itching/tingling on legs is back. I have been told I have MS but the Neurologist is still not putting that as 100%. Right now I am waiting for genetic testing to come back because they are saying I have Huntington Chorea.

What do you do for relief of the neuropathy? Do you also find certain foods make the neuropathy worse?

I know that the best way to deal with the neuropathy for me is to stay in a constant temperature and not have fans blow directly at me. Also cool showers relieve the itching for a while.
 
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readyfordx replied to JamesinCNY's response:
I, too, have not yet been diagnosed with MS but have all the symptoms. I also have two lesions on my brain. Right now, neuro has me on medicaation for nerve pain. It is called Vimpat and it helps somewhat but not as well as it did when I first started it. I am very tired of all these symptoms and the heat kills me but I am trying to keep a good attitude and do the tests my dr has recommended and hanging on. I have noticed that after taking a hot shower/bath the pain is worse and sometimes it wakes me up in the middle of the night and it is getting more intense so what do you do... Good luck to you
 
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Nancy04232004 responded:
You only have two lesions? Consider yourself blessed. I have many brain lesions with four to five dominant ones. The MRI reports keep coming back that I have 'innumerable lesions' (too many to count), yet I have, what they call, invisible symptoms (i.e. heat sensitivity, muscle cramps and fatigue). I do not know what is worse; walking around without using mobilitly aids and having these invisible symptoms that people say they cannot believe that I have MS or having the visible symptoms that is obvious that you have MS. How do you all feel about this? What is your take on this?
 
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michlama responded:
My husband has neuropathy and ms. He developed the neuropathy just 2 years ago and has had ms for about 9 years now. He has many lesions and visible symptoms. Heat definitely makes it worse, both the neuropathy and the ms symptoms. His are in numbness of limbs and loss of clear sight. Those are the most prominant.

His symptoms got worse 2 years ago. I dont think either having visible or invisible symptoms are worse. They both are difficult. When he was suffering from mainly fatigue and skin sensitivity most people were unsympathetic but it was very limiting. This took a very large emotional toll. Now with his lack of mobility and vision impairment people are more supportive and responsive but the physical toll is more.


We didnt find help from the neuropathy until we found a drug that worked well from him. Other than that it was to stand or sit with as little touching him as possible. Including a breeze, clothes, anything. Minimal skin contact was the most helpful.

I am not sure if they are related but it may be. It was after new lesions that he started suffering from neuropathy.
 
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readyfordx replied to Nancy04232004's response:
Hey Nancy...I really understand how you feel. To me, the invisible symptoms are just as bad as the visible ones, the only thing is that family/friends don't recognize that you are in pain so you usually have to tell them and I don't like doing that. The heat drains me of all my energy and brings on many more symptoms. So many people do not understand MS and they dont know that the invisible symptoms are as bad as the visual symptoms. I hve not yet been confirmed with MS but I am dealing with all the symptoms.

I am urging my neuro to keep on until we can confirm MS or whatever is wrong because I dont want to wait until I have permanant damage. I pray that I don't get to the point that I have to use visual devices so I guess I would have to say I would rather just stay with the invisible symptoms.

Good luck and God bless.
 
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readyfordx replied to michlama's response:
Thanks for your reply. The things you are describing is the same as with me. My skin is so sensitive that I draw up with one of my grandkids come near me to hug me..that is rough. I have had symptoms of MS for over ten years now but the symptoms are not going away this time. I ahve had these symptoms this time for over one year. I hurt everyday of my life. Your response makes me feel better that I have not completely lost my mind.
 
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readyfordx replied to JamesinCNY's response:
Hey JamesinCNY: No I have not really noticed about the foods but I will start be more aware of that. Do you know of certain foods that makes you worse? Yeah, I agree with the staying cool thing, it certainly does make a huge difference. Thanks for your response..
 
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Csewhappy replied to readyfordx's response:
Have you talked all of this through with your GP? I'm convinced you will have done, but it just seems plain wrong that you are suffering like this :-(


There has to be something they can do, or a medicine they can prescribe. We are all different and the meds clearly have to be appropriate for the condition ... but I'd be in agony every day, if it weren't for my Neurontin (Gabapentin). I don't believe I would function.

I'm not suggesting that's Neurontin is the correct drug for you, although it may be. However, it has to be be worth booking in with someone at your surgery who deals with pain management. Someone must have that task. Maybe, if you're fobbed off too lightly, take someone with you for moral support and who will verify your suffering; then insist, very firmly, that you do need to have the cause of your pain investigated and treated.

I'm finding the road to diagnosis long and frustrating; however, at least my pain issues are managed well. You have my sincere sympathy.
Good luck.
 
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readyfordx replied to Csewhappy's response:
Thank you Cwewhappy, I appreciate your comments and concern..This site has helped me so much..you guys just don't know..I am going to be much more assertive when I go back for my next appt. Thanks again..
 
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LHanan replied to Nancy04232004's response:
I worked at the post office for years with invisible MS. Only I knew how I was suffering. Now I am confined to a wheelchair and can barely move. I rarely go out in public now. When I do, people either gawk or look away, too embarrassed to acknowledge I exist. When my kids have friends over, the friends are frightened of me and my wheelchair. I'd do anything to go back to the invisible days.
 
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readyfordx replied to LHanan's response:
I too keep my pain and problems to myself..sometimes I go to the bathroom when I am hurting so bad I can't hide it but I try to just handle it especially until I have a firm diagnosis but I have to say the people I work with that know I have a problem are very supportive and encouraging..God bless and take care of you...


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