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

Cherie, you're teaching me a lot. I do mean a lot. I didn't know for example that some lesions don't show up on MRI. I'm a newbie

Gets me wondering... if some lesions don't show on MRI, what the next technology will be.

Probably stronger MRI technology . . .

See this:

Cortical Lesions in Multiple Sclerosis: Combined Postmortem MR Imaging and Histopathology
Jeroen J. G. Geurtsa, Lars Böc, Petra J. W. Pouwelsd, Jonas A. Castelijnsa, Chris H. Polmanb and Frederik Barkhofa
a Department of Radiology, VU University Medical Center, Amsterdam, the Netherlands
b Neurology, VU University Medical Center, Amsterdam, the Netherlands
c Pathology, Division of Neuropathology, VU University Medical Center, Amsterdam, the Netherlands
d MS Research Center, and the Department of Physics and Medical Technology, VU University Medical Center, Amsterdam, the Netherlands

Address reprint requests to Jeroen J. G. Geurts, MR Center for MS Research, VU Medical Center, De Boelelaan 1117, 1081 HV Amsterdam, the Netherlands

BACKGROUND AND PURPOSE: Cortical lesions constitute a substantial part of the total lesion load in multiple sclerosis (MS) brain. They have been related to neuropsychological deficits, epilepsy, and depression. However, the proportion of purely cortical lesions visible on MR images is unknown. The aim of this study was to determine the proportion of intracortical and mixed gray matter (GM)-white matter (WM) lesions that can be visualized with postmortem MR imaging.

METHODS: We studied 49 brain samples from nine cases of chronic MS. Tissue sections were matched to dual-echo T2-weighted spin-echo (T2SE) MR images. MS lesions were identified by means of myelin basic protein immunostaining, and lesions were classified as intracortical, mixed GM-WM, deep GM, or WM. Investigators blinded to the histopathologic results scored postmortem T2SE and 3D fluid-attenuated inversion recovery (FLAIR) images.

RESULTS: Immunohistochemistry confirmed 70 WM, eight deep GM, 27 mixed GM-WM, and 63 purely cortical lesions. T2SE images depicted only 3% of the intracortical lesions, and 3D FLAIR imaging showed 5%. Mixed GM-WM lesions were most frequently detectable on T2SE and 3D FLAIR images (22% and 41%, respectively). T2SE imaging showed 13% of deep GM lesions versus 38% on 3D FLAIR. T2SE images depicted 63% of the WM lesions, whereas 3D FLAIR images depicted 71%. Even after side-by-side review of the MR imaging and histopathologic results, many of the intracortical lesions could not be identified retrospectively.

CONCLUSION: In contrast to WM lesions and mixed GM-WM lesions, intracortical lesions remain largely undetected with current MR imaging resolution.

http://www.ajnr.org/cgi/content/abstract/26/3/572

Inflammatory lesions and relapses aren't the end-all, be-all of this disease, even though the trials for our drugs would have us believing that.

Cherie