Hi all,

Over the past year I have seen multiple neurologists, surgeons, an opthomalogists, and radiologists. After numerous tests, the neurologists agree that it is probably small fiber neuropathy with autonomic disregulation. To give a little background...I've been dealing with severe migraines since I was a child. Have had chronic migraines for over 14 years. A three year migraine (24/7) approximately ten years ago and a 9 month migraine 2 years ago. I have lived in chronic pain to one level or another since the chronic migraine started 14 years ago.

But the current issue...In December 2013, I noticed that my left toe was numb. I thought perhaps it was just related to a bunion that runs in the family until mid January when I realized it had spread to my left hand and the left side of my face. I had decided to go wheat, dairy, and sugar free to help control my chronic head pain and had also been experiencing fatigue. I was able to get in to see one of my neurologists and the PA of the other neurologist in Feb 2014. Neurologist A said it was carpal tunnel syndrome. The PA for neurologist B said she thought it was related to my migraines (I get basilar migraines where I lose motor and speech function, as well as aura symptoms). She advised I continue to watch it but not to worry. I had already made an appointment to see Neurologist B for follow up. By May, when I saw him the numbness had spread to my right foot. The physical exam also showed that I had lost my reflexes in the bottom of my feet. When I also mentioned my complaints of overheating and exhaustion he became concerned about an autoimmune disorder and ordered a battery of tests. To date I have had MRIs of my brain (continue to show the bright spots and more than the last MRI) but the MRI of my spine was clean, an LP (tested for bands-negative, lyme-negative, normal opening pressure), I had to have a blood patch as I had a CSF leak from the LP, Visual Evoked Response test (positive, but followed up by multiple tests with ophthalmologist and the optic nerve looks healthy), Auditory Evoked response test (negative), blood tests for everything from lyme, b12 deficiency, b12 toxicity, to syphilis to aids (all negative) except a high inflammation score, nerve conduction studies, a sleep study (no apnea, I sleep great I'm just exhausted), and a skin biopsy (which did not definitively diagnose sfn). By mid September (now numbness has moved on to my right hand) my neurologist B asked me to get a second opinion from neurologist group C. In October, after reviewing all of the records and the physical exam (which now reveals I don't have the ankle reflex in either of my legs and I have lost pinprick and heat/cold sensation below my knees and below my elbows; exhaustion is barely manageable on Nuvigil; and skin sensitivity is increasing) group C is convinced this is idiopathic small fiber neuropathy. Follow up with primary neurologist who essentially says there is nothing more they can do except offer to put me on gabapentin which would have the side effect of making me more exhausted.

After a lot of research I have found that much of what I was already taking for my chronic migraines is what people take to manage small fiber neuropathy--b12, magnesium, calcium/vit D, CoQ10, and two prescription drugs for prophylactic treatment of my migraines. As I said, Neurologist B agreed to treat the exhaustion/fatigue with Nuvigil which gives me about six hours where I feel slightly better than totally exhausted.

The gluten free diet does seem to help the migraines and whatever this underlying process is. I have noticed that when I have accidentally gotten gluten I am much more tired the next day.

For my adult life I have only ever needed 6-7 hours to feel well rested and my body would wake up on its own. Now I can sleep for 9 or 10 and still be exhausted. I can nap and still be tired. I do find that it is easier for me to interchange doing things (standing, walking, working) with rest to get myself through the day. I have been able to keep working but it has gotten more and more difficult and frankly it has meant sacrificing much of my personal life as all I have the energy for at the end of the day is sitting down on my couch or sleeping.

I am not depressed and have stayed remarkably zen about this the whole time (which I've wondered at times if it was a symptom) but I've been meditating since I was young and did have years of experience dealing with a chronic condition. I am frustrated and trying to figure out what next.

The pain has not been terrible, more aching, sensitivity and desperately wanting soft things touching my skin. The autonomic issues concern me more as the doctors have indicated and the research I've done shows if that continues to progress at the same rate well, its not a good thing.

So, looking for answers, options, time frames, if this will continue to progress and get worse I need to make plans, thanks for the help all…sorry for the long message but I figure it would be helpful for anyone with ideas.

Happy new year!