New to forum, lots of sensory issues
 

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!

Hi, Gislat! :Wave-Hello: 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.:)

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.:mad:

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..:grouphug:

MRI Question
 

Hi,

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

Thanks

Welcome gislat! I hope you visit often!

Skin punch biopsy?
 

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.)

Skin biopsy
 

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

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.

reply from 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!

Hi, Nilram! :Wave-Hello: 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.

Hi Gislat ~~~ Hi Nilram! Welcome~ Welcome ~ Welcome to NT. :welcome_sign::welcome_sign:

:welcome_sign::Wave-Hello: Warm hellos and welcomes to gislat and nilram :Wave-Hello::welcome_sign:

I've got some good info from reading your posts. I have mostly sensory sympoms and have yet to find a med that helps.

I hope you both will hang around and share your stories. It sure can be frustrating. Grab the fun in life where you can.

:hug:

:) Hi Cindy, Maryann, Beth! :) Fantastic resource you have going here!


Gislat, ditto on the duration for me. Years, coming and going. Doctors have told me I have arthritis, or some slight pinching of spinal nerves perhaps. And symptoms get better when I do the rehab exercises they prescribe -- but not consistently, waxes and wanes. Three+ years ago I was feeling crummy in all the various ways and my doc sent me to a rheumatologist and a neurologist. Neither really came up with anything, and about eight months ago I went back to the neurologist. He now had the skin biopsy he could do, and that pinned it down.

Though the thing about the patches of profound numbness that come and go, and a period where my sense of smell was clearly changed for a period of time, does make me wonder if I have something more going on in the CNS, like MS. One of the questions I'll ask when I see the next guy in January.

My neurologist was also reassuring, that this kind of thing is rarely debilitating or life-shortening when its discovered at my age (48). But, still, it's Idiopathic PN, so I'm wanting to pin it down further.

reply to nilram
 

Even if you had some cervical disk disease, it would not cause the sense of smell issues. I have some mild cervical disease at C34 and C45 but this would not cause my periods of facial burning. Sometimes my tongue feels funny too.

It's reassuring to know that the small fiber issues will not result in disability but still it can be painful. It's hard to convince people that something is wrong while you look fine.

Did the neurologists put you through the full MS workup? (LP, MRI brain, evoked potentials, etc)

Thanks

:) Hi Gislat,

WELCOME TO THE NEUROTALK FORUM COMMUNITY AND ALL IT HAS TO OFFER YOU! :D

Don't feel like you're alone in your situation as we have many members in the same situation of Limboland. Let's just hope they can find some reason for your symptoms and address them in a progressive manner.

We're all here to support you in any way we can.

Again, welcome! ;)

WoooooHooooooo...Welcome to you too, Nilram. I have to know what your name means and for Gizlat too.:D

Hi Sally! My username is my first name spelled backwards...

No evoked potentials or LP, but brain and spine MRIs, including the scan sequences they do for MS. Didn't find any lesions. Various, and many, blood tests. I'll be asking the new doc whether any of the CMT genetic marker testing would be indicated. My neurologist didn't think so, but I later decided he used faulty reasoning.

Fortunately for me there are few people that require convincing, and I don't feel compelled to convince any that do. Partner is supportive, sisters are empathetic. Aside from my boss, co-workers don't know, friends variously know or don't know. But, yes, I'd just rather the pain went away and it wasn't an issue.

Hi to nilram and sally
 

My user name gislat has the letter of my first name and then my last name. I should have disguised my identity better!

I live in AZ and might get another opinion at the Mayo Clinic Scottsdale, though the docs at the Barrow are likely just as good. I have heard that Mayo is big on repeating a lot of the tests and running up a nice bill. They are also big on sural nerve biopsy and I don't need yet another scar on my foot/leg.

Does CMT testing mean charcot marie tooth? I believe it starts with muscle wasting in the calf with weakness.

If you want to read about a strange neuropathy look up hnpp.org. My second neurologist briefly mentioned it in the differential but I don't have any weakness.

Take Care

Hi gislat and nilram......Welcome to NeuroTalk!! I haven't been here too often lately with all the Christmas "stuff" to be done -- it takes forever when you're in a wheelchair!!! :( Glad you found us and hang in there, your diagnosis may be just around the corner!!!

Take care.........

Welcome nilram and gislat! Sorry I am late to this....just lazy! ;)

nilram - I go to Portland (more specifically St Vincent's in Cedar Hills/Barnes Rd) for the clinical trial that I am in once a month for tx and see Dr. Stanley Cohan. I grew up in Hillsboro and used to work at VA Hospital connected to OHSU. I now live in Boise.

The MS center there is very good. I wish you luck with your appt in January. ;)

I too have started having neuropathic pain in both my legs again and the doc have rx'd neurontin but I have opted out adding more meds to the long list I am already taking. It comes and goes and if I get enough rest and take Soma at night, I can get through the worst of it.

When I was first dx'd, I had horrible hypersensitivity in my upper thighs, back of legs and buttock area. Could not even touch me and it was excruciating to wear clothes. I was miserable. My neuro tested me for PN which came back negative (not a fun test!) and decided it was a symptom I was exhibiting during an exacerbation. Great...something to look forward to! It comes and goes. I have realized it is heat related. Stay cool and hydrated and it is tolerable. Live and learn with this disease. Get myself too hot and don't drink enough water...and wham! I pay for that! (I am a landscape designer and work outside all summer! Duh...)

I hope both of you get the answers you need to treat your pain. It's not fun. It's funny, but there are some docs out there who say there is no pain with MS....:eek:


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Burning
 

Does the burning or pain seem to be equal on both sides of your body? Both feet-legs etc.

Ron

Burning answer
 

Hi,

Yes the burning is symmetric. I have had multiple tests and workups over the years. My neurologist does not feel I have MS nor peripheral neuropathy. He feels I do have a central pain syndrome but my brain and cord MRI is normal. This is all very puzzling.

Welcome RLuckyL.:) With MS, Sensory symptoms can be on either side or both. My left side is my weakest side. If it weren't for my stronger right side, I probably couldn't walk at all.

Tell us more about you, Ron. We are here to help, if we can.:)