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Hi Heather,

I have Idiopathic Small Fiber Neuropathy also, I was diagnosed through a skin Biopsy recently, I demanded the IVIG I was told its too expensive and I demanded it again so my Neurologist is going to apply to my insurance for it, he says 90% chance it wont go through but I will appeal it and get a patient advocate and give them alot of appeals there are alot of studies that show IVIG works for small fiber neuropathy. The excuse they use is that its not immune related, the heck it isnt all the reactions we have is immune related, if they cant find a cause and its not auto-immune its probably a toxic reaction, a Toxic reaction that is basically inflammation gone out of control it should respond to Prednisone as most Idiopathic Small Fiber Neuropathies do respond to Prednisone, the bad part is that Prednisone has alot of side effects, I used it for 3 months at 30-40 Mg daily and it allowed me to go back to work and get some of my life back, I did taper down as I had gained about 40lbs on it and I didnt enjoy the side effects, anyways, I was getting myself ready for the IVIG and also the doctor was betting that my skin would come back negative and he was going to farm me out to some other specialty, the look on his face when he said it was positive was priceless he told me he didnt think I had Small Fiber Neuropathy, I guess he thought all the burning, squeezing, itching, pain was in my head. Anyways he offered Prednisone again to which I said no way, and then I told him about a novel therapy called IVIG thats when he got all defensive and said its $6,000 and the insurance wont pay, anyways after alot of back and forth I pushed him into doing the paperwork for it, the good news for me is that most of my pain and stinging is gone, I just have this infernal itch that has taken over, the itch has improved and the stinging also, I am on nutritionals all the way, Alpha Lipoic Acid,acytl- L-carnetine, Benfothiamine, and I give my self B-12 shots, I have gone gluten and dairy free and avoiding junk food, sodas and crappy food, got myself a juicer and juice organic vegetables daily, all of these things have helped my pain from 10 to 1, I had the redness and burning in my hands and thats gone, all this happened in a span of 6 months, I feel its from a Toxic reaction as they have done every blood test known to man and I am apparently the healthiest person on the planet according to my blood tests and I guess thats why it was a shock to the Doctor when he got my skin biopsy. Oh also do alot of Omega 3 oil and if theres alot of burning do evening prim-rose oil that helped me alot with the burning. Try and keep your spirits up, as no one around will understand the pain or the feelings you have, you have to go inside alot and muster up a strong will power to overcome this, I had a bad reaction to Anti-depressants and always throw back the samples they throw at me, anti-depressants do not help with inflammation they may alter brain chemistry(which really freaked me out) but small fiber neuropathy is big time inflammation. You might not like the next part and its exercise, you have to do it will help with inflammation you have to force yourself, the answer is not going to lie in a pill always, you have to change your life, oh and drink lots of water.

Hope that helps, Good luck, and you will be fine your body can heal especially at 28, I am 41 and I feel like I am 90% healed just this infernal itch which is improving, always have a positive attitude dont let the doctors negative doomsday attitude transfer to you, according to them I am going to have this all my life and its going to get worse, well its gotten better I have minimal pain and so much more energy, I guarantee you that in 2 years when they do another skin biopsy you will see that my skin fibers have improved and then the doctors will scratch their heads and say you never had small fiber neuropathy as there is no cure, hogwash.

All the best,

Greg





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