Hi everyone-

It has been a while since I have been here but wanted to come back and start a new thread on Small Fiber Neuropathy.

I have been "blessed" with non length dependent small fiber neuropathy (since approx 2006 or so but confirmed in 2008) and was wondering if any current members are dealing with this condition, what they are doing for it, etc.

I am 36 and live in the NYC area.

Thanks very much,
David

Mine started September 2005. DX - 2008 or 2009. Probebly toxic.
Female, now 55 years old.

Hi Amit-

Thx for the response. Did you have skib biopsies done to confirm your diagnosis? Also, what types of treatment have you tried/currently taking?

And most importantly, how are you feeling?

Thanks,
David

Hey David, My name is Rich and I live in Virginia, I have been out of work for over a year now and have been living on my wife's income and 50% of my income thru an employer paid LTD policy. They say it is 60% but don't include bonuses which in the last 24 years has been about 20% of my income. Anyway I had knee replacement and severe arthritis and peripheral polyneuropathy and the pain, burning, sensitivity, numbness, muscle, lack of coordination, the neuropathy and arthritis since 1976 progressive and worked 50 to 70 hours a week 75% on my feet using over counter pain meds and dealing. after knee replacement symptoms got so severe that no longer could deal. The LTD ins had me send them a note from my Dr. monthly stateing I was unable to do my present job this kept up for a year, then I lost my job and health ins that goes with it, lucky for me I has a service conected disability so I could go to the VA medical center about 45 mins away, where they rechecked my arthritis and neuropathy where my Dr. there found severe arthritis, and both sural nerves no response in NCS. I asked him to write me a note for work and Ins. he said would send it to me, the next week when it came it said I was unable to maintain gainful employment and am considered permently/totally disabled. which is important wordage because ssa determines if you can work another type job thus gainful employment and also ssa requires you to be disabiled for 12 months or expected to be so. also unlike LTD ssa doesn't pay for partial disability. but if you do quality for your company LTD policy and the Dr. determines you to be permently/totally disabled your LTD Ins. Co. will pay for a company ( usually a co. called ALLSUP ) to get you approved for ssdi because ssdi offsets what yhey have to pay you. Hope this is info you still need and helps.

David:

If you have not already had one done, I would recommend that you do the skin biopsy test through "Therapath" (Google them). A postive skin biopsy would then give you a firm dignosis of "Small-Fiber Neuropathy".

In terms of symptom relief, I have found that during the six years I have battled on and off with Small-Fiber Neuropathy (yes, it can go into long remissions), the antidepressent "Cymbalta" has been very effective for me. I would estimate that I receive roughly 75% overall pain and discomfort relief over time.

The other major class of useful medication are the anticonvulsants, of which "Lyrica" seems to be the major player. I have personally used Lyrica over very short periods of time and at relatively low daily doses (50 mg day and 50 mg evening - total 100 mg daily). Even at these low doses I have still found relief.

Another approach would be to combine both Cymbalta and Lyrica, but at lower doses than you would take for either alone.

For example, the standard dosage of Cymbalta is 60 mg / day (after you first take 30 mg / day to titrate up for one week).

What might do if you find insufficent relief on just one alone is combine both. Perhaps Lyrica at a single 50 mg dose at bedtime each day against a stable background of either 30 or 60 mg of Cymbalta also taken daily.

There are also numerous other effective medications available, and I am sure that some of the experts here will point those out shortly on this thread.

Feel better!

David

http://en.wikipedia.org/wiki/Dorsal_root_ganglion

The cells may be damaged at this level in the body by toxins (including mercury), viruses (Herpes family including shingles), or drugs. Some people may be genetically prone to damage here. Once a person has had chicken pox, the Herpes Zoster virus lives in these ganglia.

example: Diabetes damages this ganglion too:
http://diabetes.diabetesjournals.org.../52/1/165.full

If you Google "damage to dorsal root ganglion" you will find more.

Hi Everyone-

Thanks so much for the follow up on this thread.

I contracted lyme disease at some point and was treated very aggressively for a long period of time and although there is debate about the topic, it is possible that the lyme disease caused my SFN.

I have had repeated skin biopsies done over several years now to track the progress of the disease. The small nerve fiber densities continued to get worse and worse until I started receiving IVIG treatment. After only a few months of treatment, the nerve fiber densities actually began to increase for the first time and my symptoms improved. The story continue to unfold, however, and I am not clear at this point exactly how I am doing, etc..but I am going to get more answers in the not too distant future i hope.

It's believed that I have an auto-immune type of SFN which is why the IVIG helps me but there is no blood test that I know of to confirm this. I haven't tried neurontin but have used small doses of lyrica in the past which may have helped a bit with the symptoms.

Has anyone tried any other medications that have helped with auto-immune related SFN?

Thanks again for the help.

-D

It is also possible that the long term antibiotics caused your PN.

Do you recall what you took and how long?

Hi Mrsd-

Thanks so much again for the response!

My first symptoms were neurological in nature and I was lucky enough after several years of doctors not believing anything was wrong to finally find a physician who came up with the idea of testing me for lyme and then finding other doctors who ordered additional neuro testing, skin biopsies, etc.

The small fiber neuropathy preceded any antibiotics that I took and preceded my lyme diagnosis. I did find that IV rocephin helped my symptoms to some degree but IVIG was much more effective.

So I don't think it could have been the antibiotics that caused the SFN since I didn't start taking the antibiotics until after my symptoms had already developed and after I got the lyme diagnosis.

-D

Have you had a workup done for autoimmune issues? I've been told that Sjogren's Syndrome caused my small fiber neuropathy. Sjogren's Syndrome is an autoimmune disease.