"idiopathic" small nerve fiber burning – please give your thoughts…

    • Anonymous
      December 20, 2006 at 4:58 pm

      well, I woke up on July 31st and my legs felt weak – as if a cold was coming on…weakness continued for two more weeks, then…terrible burning just under my skin @ forearms and most parts of my legs. Also, stiffness in my hands for awhile…

      in the past five months:

      MRI of brain, spine, neck – nothing found
      EMG of all limbs – “no nerve damage found”
      Lumbar puncture – CSFluid clear as a bell – no protein, no white blood cells…
      lots of bloodwork – no heavy metals found – no diabetes found

      The last two ANA tests from the bloodwork were *very mildly* positive – I was sent to a rheumatologist, who is confident that I don’t have rheumatoid arthritis, lupus, etc. causing my dysthenia (painful burning)

      so, at this point, the Neuros (two of them) say that this is idiopathic neuralgia and that it will “likely go away, but it will take many months”. They can’t find a cause.

      I am on 300 mg lyrica, plus just started nortriptyline 25 mg at night. Primary symptoms remain – burning in shins and forearms, with some feeling of weakness. in the past two months I seem to twitch more (fascillations), but I wonder if it was due to the gabapentin and lyrica? I am also using lidocaine patches

      so – I am wondering if I have CIPD or GBS? with no nerve damage found, and no protein in CSF, and no paralysis, and no sensory loss (but lots of sensory BURNING Pain!) It is hard to argue that is CIPD / GBS? Doctor ruled out MS because no lesions found / no protein found

      I have another appt in six weeks…if I am not better, what are the next steps? They haven’t tried corticosteroids yet, and certainly no mention of plasmapheresis / IVIG. Should I be pushing for one or more of these? Has anyone had a skin biopsy as opposed to a nerve biopsy? I want my small nerve fibers examined, but without the risk of a full nerve biopsy…

      please give me your thoughts on this. The threads on this board are very educational – lots of smart, experienced people here!

      thanks – B in massachusetts

    • Anonymous
      December 20, 2006 at 6:45 pm

      Hello B,

      I might be in the same situation as you are.

      I have been through CT scan, MRI scan, blood samples.

      Rulled out is MS, DS, anurisms, tumors, bacterial infection, borelia, blood clot in the leg or elsewhere, and ear vertigo problems. Rulled out is vitamine E deficiency, ciliac discease, virus tested for and early cancer.

      Only objective positive find is a slightly elevated spinal protein.

      My earlier bloodwork shoved a small increase in TSH Thyroid gland, but a repeat was normal. (My mother had a thyroid disease, and it is hereditary).

      There was also a slight increase in two types of white blood cells.

      My tongue feeling different. Uncertain finger movements and uncertain touch-to-the-nose movements as well as my left foot being unable to feel cold things. Reflexes are normal.

      Neuro suspected a sensory polyneuropathy and sent me to EMG.

      Todays EMG test is normal too. I have no nerve infection, the doctor said.

      I have slowly trained my muscles back into working order, and they work when I am not too tired.

      I still have sensory oddness all over (tingling, burning, prickling, numbness, sensitivity to heat), especially in the skin, feet and hands and at night. The electrical buzz from EMG was not far form my normal symptoms, including the cramping. My balance is still off, and I have difficulty in walking (it is like on ice scates). When trying to stand on my heals, I loose my balance. I have an illusory body tilt to the left, and head tics and hand tremors when I am tired. Main problem right now is fatigue. (I have posted all this under my thread “From Denmark – balance – tremor – CIDP?”)

      B, thank you for posting this. When I saw this – I did some searching on the internet and found that small fiber neuropathy could be connected with thyroid disease. It is mentioned here

      [url]http://www.thecni.org/reviews/13-2-p07-treihaft.htm[/url] and [url]http://medpolicy.bluecrossca.com/policies/LAB/intraepidermal_nerve_test.html[/url]

      I also have to wait for my next appointment now.

    • Anonymous
      December 20, 2006 at 8:25 pm

      even if you tsh levels are normal your thyroid can be out of wack keep talking to your doctor. and the thyroid can cause these problems

    • Anonymous
      December 20, 2006 at 8:45 pm

      hi b & welcome,

      if they did the ncv part of the emg & it showed no damage, you do not have gbs nor cidp. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 9, 2007 at 5:23 am

      I just joined this forum because I did a word search on “small fiber neuropathy” and found your post. I felt I was looking in a mirror. My symptoms were spontaneous, just like yours. Long story short: Five years of riding a mental roller coaster and 6 doctors later, an MD linked my symptoms to my thyroid–to which I’ve been diagnosed “hypo” for > 10 years but its been under control. The best analogy she had was to diabetic neuropathy–“just because you keep your sugars under control doesn’t mean you won’t get/have diabetic peripheral neuropathy.” Within those 5 years, I, too, got everything else that was associated with DPN–GERD and GI problems–possibly gastroparesis but diagnosed with IBS. I wish you luck in finding a reason–sometimes not knowing is more painful than your symptoms.