Help from Mrs. D
 

Hello,

My name is Mathew and my story is too long to write. I have been reading a great deal on this board for several months now and I really need some advice. I've had more work ups from more doctors than I know what to do with. I've tried about everything I can think of and many of the things here on the board. I really could use a sounding board from someone who knows a great deal about PN. I believe I have a SFN. I have normal EMG/NCV, normal MRI, normal blood work (Yes, every test they have) but still burning, tingling and pain moving up from my feet to my legs and now in my hands. I'm getting worse, I'm scared, in pain and trying my best to figure out what is going on. I have been steadily getting worse for 3 years now.

Mrs D. Do you consult on any of these issues? You seem to be far more knowledgeable than my doctors. Maybe there is something I'm missing. Maybe there is a vitamin I have not taken in the right doses. Anything. I refuse to give up but I am running out of ideas and I would really be grateful if you would let me contact you for some advice.

Sincerely,
Matt

If you've been reading here--
 

--you likely know by now that there are many possible causes of neuropathy, and the work-ups to find them can be very long (and expensive), but that many people don't have doctors that are experienced with neuropathy and who stop investigations prematurely.

Have you looked at the Quest/Latov serological testing for potential neuropathy causes:

http://www.questdiagnostics.com/test...eralNeurop.htm

. . .and the Liza Jane spreadsheets:

www.lizajane.org

These papers explain how people with small-fiber neuropathies often don't present with abnormal tests on standard examinations or even on nerve conduction studies or electromyography (EMG):

http://www.ccjm.org/content/76/5/297.full

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

Well knowing something about you would be helpful.
Age, occupation, hobbies, drug history, vaccine history,
what you were doing when this started, diet, B12 levels, Vit D levels, diet, etc. There can be triggers, and some people and doctors don't realize this. Even getting nitrous oxide for a surgical/dental procedure could trigger some people!

I know this is not what you want to hear, but when doctors tell you everything is "fine" that may not be really the case. They are vary in their ability to interpret tests.