I just got the dx of neuropathy. It is what has been causing my feet burning, tingles, cramps, pain... It appears MS is holding and not causing problems at this point, but neuropathy is. I'm really scared. I was thinking about Hopkins for the MS and do have my info there. But, now that I have neuropathy, will it even make much of a dif.

I understand neuropathy is common in people with MS and can cause just as many problems. I understand life can be h*ll with it.

Please - any info or experience with it. I know we have a board, but I really want to hear from those with MS or MS experience.

I deal with all the symptoms you just mentioned. I do not think neuropathy is a separate dx -- just may be part of ms. Neurontin has helped me deal with the burning/tingling pain.

Neuropathy seems to be a big part of my MS. I get pains in my head/face/mouth, and I get the limb sensations as you described as well.

Like ON, L'hirmettes, and transverse myelitis; neuropathy is the result of damage done to the nerves (most likely BY the MS), and causing the symptoms.

I have it too, and many of us do either intermittently or permanently.

Cherie

I suffer from neuropathy when I have exacerbations or get over heated or overly fatigued, but not on a daily basis.

My doc has rx'd lyrica, but the clinical trial doc says no. I can take neurontin for it, but don't want to deal with another med so deal with it. Pain meds help and when it gets real bad, it's usually a sign that I am headed for an exacerbation and then the IVSM calms it down.

It's not a pleasant symptom! It was one of the first ones I had and just call it hypersensitivity. Don't touch me. It mostly affects the back of my thighs and my feet.

I was tested for peripheral neuropathy and tested negative so mine is definitely associated with MS and nerve damage.

As you know Sheena, everyone is different. Good luck with this new symptom and I truly hope you find some relief.

Here's a link to information about Pain on the NMSS website.

http://www.nationalmssociety.org/abo...ain/index.aspx

Cheryl, thanks for the link

I've had each item listed in the 'Acute Pain' section.

I currently take Amitriptyline. I was only taking 10mg before (I didn't find this did much), but my neuro just upped to 20mg at night, and I find this amount is helping more so than the 10mg did.

I still have pain, but it's lessened.

It seems to reason that it is damage done to the nervers by MS. My July MRI was stable so I guess this is damage done prior to MRI that is just showing up. Would that be correct?

This also has been going on for 3 mos every dam* day. However, it does vary. It seems to vary from mo to mo. It stays the same during the mo ( then infusion) and it changes. 1st change was for the better, but 2nd change is much worse then ever. Hence, nerve test and here I am. This sucks. I'm on cymbota 2X but it does not work.

In addition my cog, typing... had really improved w/ty. But, this mo I'm regressing. Same for mood, depression....

Yes, massive stress but this has been on going since I was Dxed in Jan. People here in Davidson Co NC think no one can raise a kid if they have MS.

Sheena, a very large % of our lesions don't even show up on a MRI, so there is no way for sure to know if there is inflammation going on "somewhere".

Additionally, a lot of times the activity that causes this is from our spine, and they don't always MRI that every time. Those lesions don't enhance the same way either . . .

There is the chance too that there was axonal damage from that last big flare, that doesn't heal. Even when we don't have "activity" going on in our MRI's, axonal damage continues to occur (this is very obvious by those with SPMS and PPMS, many of whom don't often have visual "activity/inflammation" in a MRI, but continue to progress with the disease).

An MRI is really just a dx tool IMHO. After that, the best measure of how we are doing is "how we are doing".

Cherie

My presenting symptom was Peripheral Neuropathy and it was declaired ideopathic. After a few years my reflexes got more brisk I was found to have lesions in my spine which later went away. That is classic spinal MS.

Yes, it hurts and burns like H*ll - all while being numb. This is symptomatic of demylination of nerves. The holes in the sheath of the nerves cause pain and the same holes cause poor transmission between the nerves and the brain (numbness).

I've tried Neurotin (stupid), Amitryptoline (fat), Pregabalin (suicidal) - all with too many side effects to continue. Now I'm taking Oxycontin and Morphine (for breakthru pain). I've gone from 30mg of Oxycontin 2x a day to 20mg 2x a day. I also take 90mg of Cymbalta a day. My pain is actually getting better. My nerve conduction tests have shown great improvement over the last several years. I have been taking ALA (Alpha Lipoic Acid) for years (See my website for more info - I sell nothing on it.) My neuro gives no reason for the change although she said that she has never seen any improvement in any other patient and I am the only one taking ALA.

I want to try the RevImmune therapy for my other MS symptoms especially the balance, fatigue (yes, I take Provigil) and heat sensitivity. I am aware that if I am "cured" I will still have the nerve damage in my feet. I can live with that although I hope it will get better over time, maybe with the help of the ALA. I am tired of being sick.

So that's my input on neuropathy. So sorry you have it. No one understands except another with neuropathy and we wish we didn't understand. Sometimes even the neurologists don't understand. I've had one neuro tell me that there was no association between peripheral neuropathy and MS and she is an instructor at St. Louis University. I'll be glad to give you a non-referral.

From my understanding, and I haven't read this whole entire thread, but neuropathy is usually written as neuropathy secondary to MS in medical terminology.