[nodsirrah]

I was diagnosed with non-diabetic SFN last May, I can live with the pain and hot/cold lower legs and foot pain during the day but at night I frequently remove the covers for an hour or so and put them back for a couple hours all throughout the nights, needless to say I don't get much sleep.

I have been seeing a Neuroligist since may and he has confirmed SFN with the skin biopsy and has done all the testing to determine what causes it and finally agreed it is Non Diabetic. I tried all the his suggested prescriptions with no results.

I have tried every supplement mrsD and others have suggested such as:
Dosage and daily totals:
Optimized Folate 1000 MG 2000 MG
Methylcobalomin B12 5 Mg 5 Mg
Metafolin (L-Methylfolate) 800 Mcg 2.4 Mg
Mega Benfotiamine B1 (+10 MgThiamine) 250 Mg 500 Mg
Magnesium Citrate 200 Mg 400 Mg
P-5-P (B6) 50 Mg 50 Mg
Vitamin D3 5000 IU 5000 IU
Acetyl L-Carnitine 500 Mg 500 Mg
Alpha-Lipoic Acid 100 Mg 100 Mg

After reading some posts I asked my Neurologist for a prescription for Tramadol. I experimented when to take it and settled on 2-50 Mg at dinner. The 100 Mg is extended release and costs about 5 times as the 50 and I don't have prescription insurance. I also take 1 Tylenol night time sleep aid at bedtime.

I continued with all the above supplements for 6 months with sufficient success to allow me to at least get pretty good sleep. I then stopped each of the above supplements for a couple weeks and when I ran out of the Acetyl L-Carnitine and Alpha-Lipoic Acid at the same time I was miserable within a week, it took a few days to restock them and within 3 days I felt amazingly better. I continue the Tramadol (Dinner), Tylenol night time sleep aid (Bedtime), Acetyl L-Carnitine and Alpha-Lipoic Acid (with my wakeup coffee 1/2 hour before breakfast). I have no idea if only taking the Acetyl L-Carnitine or the Alpha-Lipoic Acid will have the same results, but for the cost I am not willing to experiment! I am doing quite well now after 3 months on the above, but not as good as prior to the SFN. Total cost is about $33.00 a month.

I have had 5 back operations due to severe Sciatic pain, the last being fusion of L3, L4, and L5. The pain, needle pricks and numbness I have now seem to follow the same path as the Sciatic nerve but the Neurologist says only 4% of SFN is caused by nerve damage so he basically gave up on me, or it may be he was insulted when I asked if he had successfully treated anyone for Non-Diabetic Small Fiber Neuropathy, he did not answer me and went back to his know-all computer software program.

Same old caveat, it works for me, it may not work for you.

[debbiehub]

I also have non diabetic sfn caused by my rsd spread or is part of the rsd umbrella ??, I am going to try your vitamin regiment ,,,,,,,
I have tried several txs that did not work, ie, ivig

Deb