[gislat]

Hi all,

I have seen from the posts that getting a diagnosis can be frustrating. I have suffered from burning dysesthesias that come and go for years. At one point, I was diagnosed with possible MS and started on copaxone but there were no brain of spinal cord lesions on MRI. The LP was negative too. I moved to big city in 2003 and saw a well known MS expert who of course felt the MS was a misdiagnosis (given the negative scans and history). The burning comes and goes but has been worse recently. My neurologist feels I may have some type of small fiber peripheral neuropathy. I then went to a neuromuscular expert who of course told me a true PN was unlikely (argh!). Right now I am just trying to control the symptoms with neurontin and paxil. I am in limbo.

Thanks for listening!

[AfterMyNap]

Hi, Gislat! Welcome to NeuroTalk!

A lot of what you are experiencing sounds familiar to me. How long since your last MRI? Have you had more than one? Sometimes the lesions appear a little later.

I hope the neurontin is working for you, many who use it report good results.

Have you found the PN forum yet? There may be some helpful advice and additional support available for you there, as well as here, at our little nutfarm.

[SallyC]

WELCOME GISLAT!!!

So sorry for your pain and your Limboism. A lot of people with MS find themselves there for awhile, until their Docs get some guts and actually DX them.

It's very possible to have MS with no lesions showing, yet, on MRI and no bands on LP. At least Doc is giving you Neurontin and...thank God for Paxil.

Hang in there and come here to vent and even laugh, whenever you want. We are here for you..

[gislat]

Hi,

I had another MRI of brain and cervical cord last month.

Thanks

[Taffy]

Welcome gislat! I hope you visit often!

[nilram]

Similar symptoms here, burning, tingling, pain, and numbness that comes and goes. Some places more constant than others. I've been diagnosed with PN, but reading this thread made me wonder if that might be a misdiagnosis and I might really have MS... Then I remembered my skin punch biopsy -- small bits of skin taken from my hip and ankle, sent to some lab in New Jersey. They counted up the peripheral nerves and saw that I have significant peripheral nerve loss. If you haven't had that kind of test, I highly recommend finding a doctor who will discuss it with you. It seems like it's vital in terms of having a differential diagnosis.

There aren't many labs that do the test. Mine was through Therapath. In my case, they don't have a contract with my health insurance company, so the insurance paid only 60%, but someone at Therapath has been hounding them for months to cough up more money. I suppose if that's unsuccessful, I'll end up paying the 40%, which will be about $500. Odd to say that I'll be fine with paying it, I'm just so glad to have a better idea of what's going on.

This is my first post, so the system won't let me put a URL in the message, but if you go to their site ('therapath dot com') you can poke around and find abstracts of the research behind the test, examples of what they're looking at, and an order form your doctor can use to obtain the materials used for the biopsy procedure.

(The biopsy did sting at the ankle, apparently its a hard place to anesthetize, but it wasn't that bad.)

[gislat]

Nilram,

What are they treating your symptoms with? I have found my symptoms come and go too. The other biopsy option is the sural nerve near the foot. The problem is you would up with some permanent numbness.

Do you find that physical activity makes the symptoms worse?

Thanks

[nilram]

So far, I've just been using Neurontin when the pain makes it hard to sleep, but honestly a sleeping pill gets me over the hump more quickly. And I find if I've gotten a good nights sleep, the symptoms lessen the next day.

I'm going to see a doctor at the local university hospital (OHSU, Oregon) in January and see if I can get a more specific diagnosis (right now it's "Ideopathic" PN). After that I'm going to try some of the nutritional supplement ideas from John Senneff's third book ("Nutrients for Neuropathy"). The effects are getting worse, its being more distracting and distressing during the day, so if that stuff doesn't help, I'll check out Cymbalta and go from there.

For me, mostly exercise helps. Yoga, weight training, even running, certainly stretching. Vibration and sitting in one spot makes it worse (I'm not looking forward to a cross country plane ride on Saturday). Being warm and unstressed helps. Have you tried some not-too-vigorous yoga and stretching? I'll often take an extra heater in the room where I'm stretching.

I'm not a doctor, but I would certainly want a skin punch biopsy before a sural nerve biopsy, specifically because the latter is more invasive and leaves permanent numbness.

I've got a certain amount of relatively constant numbness and pain, and then there's random spots of numbness or burning that come and go. For a while my gums will burn, or the spot between my upper lip and nose will be totally numb. Or a few days ago, the back of my right hand was totally numb for a day and a half -- like it had an injection of novocane. And then it returns to a 'normal' level of numbness. Odd.

[gislat]

Hi,

How long have you had the symptoms? Mine have come and gone over many years. I had two minor foot operations in oct/nov and the symptoms really flared up again after that (?stress related). I have been through the unending tests over the years which include lumbar puncture, emg, evoked potentials, myelogram and numerous blood tests.

I have recently seen a couple of neurologists at the Barrow neurological institute in Phoenix. The PN expert found my neuro exam to be normal. He called my symptoms small fiber dysfunction like and reassured me not to worry. I'm not sure how much good that does. I see my other neurologist who is a MS specialist next month.


Thanks!

[AfterMyNap]

Hi, Nilram! Welcome to NeuroTalk!

I'm glad you found us. We're a lively bunch but we do understand much of what you are experiencing and it is hard. I've never heard of a skin punch biopsy, it sounds pretty horrid to me.

So being in elevated heat helps more than hinders in your case? My case (MS) is that warmth of any significance kind of melts me like jello and I become weak, even less coordinated and terribly fatigued.

I agree, stretching is great for us all and feels so good.