Any ideas. please help
 

Hello,

I am new here but have struggled with symptoms for over 3 years. 39 year old male with body wide twitching and was diagnosed with BFS 3 years ago.

I just got back from my neuro recently and she said my newest (5th) NVC showed that my carpel tunnel is worse, (which I will probably have surgery). But more disturbing is she said my right and left peroneal nerve is compressed at the fibular head and now I have sensory motor polyneuropathy. She said this is the reason for the extreme pain in my legs and feet but offered no help other then increase the Lyrica.

She said I have nerve damge in my legs and feet due to overuse.

I cannnot stand for more then 5 minutes without extreme pain in feet, legs and back. Mri's, emg, blood all clear. It has just recently gotton this bad. Is this common with PN?

I take Lyrica twice a day, .5 klonopin and baclofen. They help but the more i use the muscle the more tight and painful it becomes.

Any ideas. I am in a good deal of pain. She has no ideas and has washed her hands of me.

She said the nerve damage will get better within 3-6 months if I don't overdue. I bearly do anything at this point anyways, what else is there, not standing?


I have a desk job and do sit a lot. She said this could be a contributing factor.

Sorry but I am extremely down. Thank you very much.:)

DD

I would see a new neurologist. If sitting is a contributing factor, you might try putting a foot rest under your desk to elevate the backs of your legs off the chair seat so you are not putting to much pressure on the back of your legs. They also make seat cushions that are wedge shaped so that your seat doesnt cut off circulation or pinch nerves as you sit. You might try one of those. I have a foot rest, lumbar support and wedge cusion on my desk chair at work, its pretty comfy.
Also try to avoid crossing your legs. Honestly though, if the pain is that bad and your doc doesnt know what to do, get a new neuro or get a second opinion.

Thank you for your reply. i will try these things.

Hi. I am sorry for your pain and I also would get another opinion from another neuro. Did they give you any direction of why this is happening other then the overuse part? I have rsd in my legs and they thought mine may be do to overuse though I also have PN. Have you been to other specialties to rule out things like auto immune issues etc? Did this neuro think a pain doc may help you? I know everyone is different and for me they want me to be on my feet through the pain. I am not saying this for you but I know in the start of my problem I had some wrong direction which I feel screwed me up so I am big on extra opinions to be safe then sorry

perhaps it is time to consult a neurosurgeon....who will do your carpal tunnel? that doc actually might be worth a try for your leg issue.....i dont understand her description of the issue....i know exactly (only too well) where the nerve goes....what over use is she talking about? and if it is being impinged, by what ? and do you need "body" work, ie massage of some sort, etc?
make sure your work station is fine tuned for YOU, you legs shouldnt be hanging on the edge of the chair, as someone else pointed out...good luck

Thank you both for your reply's.

She gave no real eason other then progressionof PN and/or crossing my legs. She did say I am really bony at the nerve head in my leg.

Pabb,

Funny you say that. I did call a neurosurgeon and have an appointment Monaday. All I want to know is do I go to therepy for this? Do I continue to try and do some sort of light work out? I don't want to damage my nerve worse.

I don't even understand polyneuropathy. All I know is I have nerve dysfunfunction in my jaw/face, arms/hands/ legs/feet and it is driving me crazy.

I am going to ask for a 4th emg. Doesn't that tell someone how bad the nerve damage is?

DD

The EMG may reveal more damage--
 

--or it may not; not only are EMG/NCV tests not always a reliable indication of the extent of nerve damage (one can have annoying and considerable symptoms of compression, especially sensory, and not show much in the way of deficit), but if the smaller, unmyelinated fibers are involved, those tests, which can only measure larger, myelinated fibers, may not show anything.

Compression of nerve at the knee head, by the way, is actually very common--I have a degree of it in my right leg that extends down the front of my right calf (it's a slight numbness, not what you're feeling, but I empathize). This is often found in people with imparied glucose tolerance, but also often in athletes (compartment syndrome, in which bulging muscle actually presses on and displaces nerve), and, of course, in people who assume squatting and bending positions ("strawberry pickers' palsy"), or sit cross legged often (I'm certainly guilty of the latter). The knee is also a place, like the spine, at which osteophytic spurs can grow as we get older, and these can compress nerve.

Most people who have systemic nerve damage from impaired glucose tolerance, other metabolic problem, or autoimmunity or toxic assault will be more prone to compressive effects from then on--there is actually a "double crush hypothesis" that states that a second, compessive assault on a nerve can combine with other reasons for nerve dysfunction to produce symptoms that would be greater than the assumed sum of their contributing parts. I don't know if you've had a thorough workupf or more systemic causes of neuropathy that may be contributing to all this, but it can be a long (and expensive road) of ruling out possibilites. Take a look at the Liza Jane spreadsheets at www.lizajane.org, and see which of these tests you may have had (the sheets were designed to be a very comprehensive listing of tests for neural symptoms and a way to track test results over time)--I'm betting not a lot of them--and it may be a way to encourage neurologists to delve deeper.

Thank you very much. I will check out this site.

I have actually had extensive testing at a neuromuscular clinic and walked out with a dianosis of Metabolic Myopathy based on their testing. I have had high metals in the past and my ammonia levels go of the charts during exercise. I tried many diets........but nothing helps. I'm pre - diabetic but my glucose levels are low. To much sugar does effect my system however.

Thanks again. Good info.:)

DD