Peripheral Neuropathy Possible Small Fiber
 

Hello everyone!

I am diagnosed With small fiber neuropathy (without biopsy because my insurance will not cover.) My symptoms include buzzing on my legs and arms, sometimes my lower abdomen. I have Benign Fasciculation Syndrome which pings/twitches me on my legs and arms (mostly legs) at rest. Sometimes the BFS are in the same place for less than a minute but mostly they are not. I feel a sensation of electric shocks on my fingers, between my toes and under my feet
I have had extensive blood work. My FBS was 91 mg/dl. (I have polycystic ovarian disease.) My initial Vit B12 level in June was 212 ng/nl and Vit B12 injections were started. All of my other blood work done for polyneuropathy was normal. MRI of the head was normal. My EMG and NVC were normal. However my physician said I have carpal tunnel, in addition to the SFN, and injected my wrists.

My questions are:

1. Does insulin resistance cause SFN if you have a high normal FBS?

2. Does a VIT B12 level in the low 200s cause SFN? If so, how long does it take for the symptoms to abate if the deficiency is corrected?

3. I am on gabapentin 300mg in the morning and afternoon, 600 mg at night. It helps a little...is the dose too low?

4. I started alpha Lipoic Acid and Acetyl-Lcarnitine. Do either of these medications help and how long does it take for them to have an effect? If so, what dosage do you use? Is there a different supplement or treatment that you use that is effective?

5. Is there another medication that I should request from my physician that works for you?

6. Finally, should I seek a second opinion at Cleveland clinic or John Hopkins University?

Thanks all!

Sherry

To answer the questions in order--
 

1. It certainly can--there are more and more reports of those who have neuropathy symptoms merely with impaired glucose tolerance without frank diabetes. Your fasting blood sugar, though, wouldn't be as good an indication of this as an extended glucose tolerance test, with both glucose and insulin levels drawn every half hour to see the rise and fall patterns, would be.

2. Yes, and your level is pretty low, no matter what the "standard ranges" say. Supplementation can help, but it may depend on how long your symptoms have been ongoing and the extent of damage. Injections aside, I would take at least 1000mcg/day of methylcobalamin B12 to ensure some is being absorbed regularly. (See our B12 thread in the Useful Websites section up top.)

3. That gabapentin dose may be too low (that's not a big dose at all)--usually the dosage is raised to tolerance and to see the point at which no further relief is noted. And often smaller doses are taken closer together (gabapentin's half-life is somewhere between 5-8 hours, depending on your metabolism and kidney function.) You can experiment with raising it a bit at a time and see how it goes.

4. Many people do use both those--some use the R-lipoic form of alpha lipoic, which had greater effect for smaller dosage (as some have reflux difficulty with the acid component). Some also use coenzyme Q10, and B-complex. Supplement regimens vary considerably individually, and often take a lot of trial and error to maximize.

5. Some people with bad symptoms find some of the antidepressants like Elavil, used in small doses, have a synergistic effect with the anti-seizure meds like gabapentin or lyrica. There are also other anti-seizure meds that can be tried.

6. I'm always a fan of a second opinion at a good major medical center that does research in neuropathy. Hopkins is definitely one; Jack Miller in Chicago, Jacksonville Shands in Florida, Cornell-Weill and Columbia Presbyterian in New York, Massachusetts General in Boston, Washington University Neuromuscular in St. Louis, and University of California at San Francisco medical center are others. Of course, you have to be able to travel and afford them.

Thanks Glenntaj! I appreciate the thoroughness of your response to each question. I know that took time, and I am grateful. I will talk to my endocrinologist about doing the glucose tolerance test if my neurologist is reluctant to do the testing. I am being treated by the endocrinologist for benign thyroid nodules. I will initiate the methylocobalamin vitamin b12 sublingual. I will switch to the r-lipoic acid 240 mg daily. Is that the right dosage? I will add the coenyzme Q10 and B complex to see if it helps. I thought the gabapentin dosage was too low. I contacted John Hopkins and I will need to send them all of my test results to see if they will see me.

Thanks again for your response!