Small Nerve Fiber Neuropathy

[RobertSponge]

After 3 years of pain and suffering, I was finally diagnosed with Small Nerve Fiber Neuropathy. I know very little about this disordered and don't even know what questions I should be asking my Neurologist. Right now I have been told all they can do is prescribe Pain Medication. Is there further testing I should be pursing? Should I see a Geneticist or Immunologist? I just found the day before Christmas and my doctor has not been available for me ask questions.

[odiddy]

Hi. I don't know how old you are, but I have small fiber neuropathy everywhere- I'm 24 and there isn't anything they can do but describe pain medication. How were you diagnosed? I was diagnosed via biopsy. I take 600mg of lyrica, ultram (tramadol), and cymbalta for the pain- and it all helps- the burning sensations are so bad that I sweat continuously without all the medications. note- the pain medications really really help!

[lorene65]

I wouldn't wish it on my worst enemy!  The cold is so cold and painful.  I must have had it in my feet for years because it has since progressed to my hands and forearms.  I was dx by a sweat test - I don't, sweat that is.  It's part of autonomic neuropathy.  I'm headed to Columbia Presbyterian Hospital in NYC next month in hopes that that and the rest of my mess might receive some help.  I was on lyrica before the small fiber but became allergic to it and had to stop - was glad to drop the 20 lbs it put on.  Ultram and my stomach do not get along at all.  

Do you just get the coldness?  I get fire in my head that is equally painful as the cold.

I am sorry that we all have this.

[thedeloachs]

DO NOT give up on an underlying cause for this!! Yes there are ALL kinds of immune disorders and Connective tissue diseases that can cause this. Mine has just now been diagnosed as auto immune. Get tested for Lymes, heavy metals poisoning, Thyroid disorders, have your ANA's checked, sed rate, RA level.....Gosh there is so much. I have a Rheumatologist, Neurologist, Pain management Specialist, Corneal Specialist, and now an Endocrinologist. Pain meds do help. I had epidurals which really helped with the leg pain. I am 25 yrs old and have had this for 4 years. Does your skin get blotchy or mottled? The cold is intolerable for me. Don't let them tell you it's idiopathic yet! Make them check everything. Even if you have to fire your doc and get another. I have fired several but I now have an answer for the madness!!! Good Luck

[jason80]

How were you officially diagnosed? I have small fiber neuropathy (symptoms at least), but my nerve tests came out normal. I'm glad you get some relief from pain meds, treating nerve pain is not trivial.

I like that motto, don't let them tell you it's idiopathic yet!  Good advice.

thedeloachs,
I'm curious that you mentioned Corneal specialist, may I ask why this one? Is this for cornea problem or pain in cornea? I have surface pain and wonder if this is more a nerve issue than a dry eye issue.

[thedeloachs]

Yes I'm having alot of pain in my eyes. I do have severe dry eye from Sjogren's. That's an autoimmune disorder that attacks moisture producing glands. I actually had an MRI of the pituitary this morning looking for a tumor. These tumors can press against the optic nerve.

[soldy]

Hi,
In your recent MRI did your specialist reported size,location and frequency of cysts around pineal gland.