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Old 02-01-2014, 01:46 PM
hopeful hopeful is offline
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Join Date: Aug 2009
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10 yr Member
hopeful hopeful is offline
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Join Date: Aug 2009
Posts: 914
10 yr Member
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Quote:
Originally Posted by tarheel15 View Post
I have had 15 months of progressive burning pain all over my body (mostly in extremities) since having a flu vaccine in Oct 2012. Burning is worse with activity, and warm and cold extremes, tight clothing etc.. Also I have noticed recently that accupuncture makes it worse.

I have had extensive neurological workup, including multiple MRIs, EMGs, NCV, LP and Therapath skin biopsy. The biopsy was done 1 year ago and showed normal nerve fiber density and sweat glands.
A new symptom over the past 3 months has been severe fatigue and insomnia along with depressed mood. I have tried numerous medications and cannot tolerate much with exception of Neurontin. I have been on methyl-b12/folate since the beginning with a recent b12 level of 1400. I am also taking vitamin D3. I could not tolerate SSRIs and SNRI meds or Lyrica.
The fatigue and insomnia have gotten so bad that I've had to go on medical leave from work (I am a physician myself).

My integrative doc wants me to take a supplement called Nuvoxil (which has L-tryptophan, l-theanine, taurine) to help with sleep and mood. She also wants me to switch to Methyl-b12 subcutaneous injections.
I am confused as to what to do:
1. Do I ask my neurologist to repeat a skin punch biopsy to look again for SFN since it's been 1 year?
2. Do I consider IVIG?
3. Any other nutritional/supplement recommendations - esp. for the severe fatigue and insomnia?
4. Would things like d-ribose or acetyl-l-carnitine help? I've been reading Dr. Teitelbaum books.

Thank you so much.
Hi Tarheel,
I don't see why you shouldn't ask for another skin biopsy. As you know, there is little pain with the process. Also my understanding is the is relatively small risk of infection.
I use melatonin for sleep. I'm not familiar with Nuvoxil. When I originally was diagnosed with SFN my neurologist had me try Elavil. It aids in sleep and helps with depression. Just a suggestion. I stopped taking it because I was too tired the next day.

I then started Cymbalta for the nerve pain and it worked. Have u tried this SSRI?
Unfortunately, I have come to the conclusion that fatigue is part of all this and is not going away. Have you had your thyroid tested?

If IVIG is being offered to you. Have your doctor apply to your insurance for it. It may take a while to get it approved. In the mean time you can do your research on it. Most research states that the sooner you begin the treatment for neuropathy the better the results. I do get IVIG once a month. It does not last very long. Maybe ten days. The most significant result for me is help with leg weakness.

Mrs. D will be the best to offer all the supplements. I personally take R lipoic acid , CoQ10, Krill oil.

I hope this helps a little. I know how hard it is to be in the medical field and not be able to figure this all out. I am a nurse and that has always driven me crazy. I have had SFN for 6 years now. I have been on IVIG for about 8 months. I think probably not early enough.

I hope this helps. Keep coming to the site. Even if you don't want to write there is a lot of good information to read. You are at the right place
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