Funny thing happened when I went to see my Rheumatologist today, I told her that I was planning to see a Neurologist, she recommended the same one that I came up with!
That is a good sign! Just shows you how few there are, that treat this kind of thing, in San Diego. She has been in practice for several years, so she has a lot of connections. I told her that I was thinking it may be CMT, she is still thinking Pre-Diabetic Neuropathy, we shall see...
I am also back on Ambien for sleep, I was taking it for two years, and then went off it for a few weeks, but haven't got much sleep.
Is this a common thing with PN, this inability to get to sleep and stay asleep?
Then Costco pharmacy screwed up my prescription, I was at the big box store for 1-1/2 hours! I ate a lot of free samples, but that is a long time to be on my burning painful feet!

I actually saw Dr. Sahagian before going to UCSD. He did the skin biopsy that showed reduced nerve fiber density consistent with SFN. Since we live so proximate, we should maybe have a cup of coffee one day. It sure would be nice to actually meet somebody that could truly empathize with my journey. Also, given your religious background, any insights on coping with this would be truly appreciated. As the pain has increased, the coping with this has become extremely challenging.

Yes, lets do that! I will PM you when I go to the coast next. Right now I am heading to the desert... It would be nice to talk to someone that would understand the level of pain, most of my friends have no idea. Having meditation practices have helped detach myself form the pain, but with it always there, it makes it a challenge!
Curious, why did you decide to go to UCSD after Dr Sahagain? Being that there is no cure, has UCSD offered you anymore insight or relief from the PN?
Take care,
Jon

Sfn
 

Hello- I am also in the San Diego area and I believe I may have small fiber neuropathy in my feet since 2005. I was diagnosed with Fibromyalgia but I am also questioning the diagnosis. I had a negative EMG in 2005 which leads me to believe it could be SFN. This pain seems to wax and wane in my case. I was doing very well for the last four years until I suffered a relapse with my feet. I have all of the sensations with SFN but I can't get a definite diagnosis. In 2005 I saw numerous specialist and each one gave me a different diagnosis depending on which type of specialty they studied. I gave up the search after getting the run around and felt very discouraged and turned off by the medical field.

The medications that have helped somewhat are amytriptyline and Gabapentin. In 2005 I also started taking 10 mg. of oral hydrocortisone and that's when the pain really turned around. I am now off of hydrocortisone as of the last two years.

I was wondering what Dr. Sheean has helped you concerning SFN? I have not had a skin biopsy, it was never offered, but I have researched this and am wondering if this test could help me get a proper diagnosis? Thank you.