Originally Posted by jelinx

Hi all,

This is my first post. I am 56. I have led a very healthy life. My family is healthy overall. I don't smoke. I drink maybe more than average, but no way daily. I am not diabetic. I am 5'9" and down to 176 lb. Just under 5 months ago I suddenly experienced burning in my calves and shins. Later I put 2 and 2 together and recalled that about 2 weeks prior to the burning, I have had 2 or 3 days of an odd buzzing in my scrotal area. I thought maybe a muscle twitch, but it was weirder than that. I am something of an alarmist, so I went to GOOGLE almost immediately when the burning started and concluded I may have first signs of MS. Yes, I was overreacting. It took me a month before I finally got in to see my PCP. He said 'neuropathy' and referred me to a general neurologist. I was floored. Neuropathy? Me? Why? I became a nurse mid career and to me neuropathy was something diabetics got, or maybe people with nerve impingements. Long story short, the blood tests from my PCP and the neurologist have shown nothing. The neurologist is not a specialist in this area but suggested small fiber neuropathy based upon my presentation. I was glad it wasn't MS (it was symmetric he explained), but then I got to reading about SFN and started freaking out all over again.

He started me on nortriptyline (only a token dose of 10 mg per day) and offered nerve conduction tests. I have a high deductible plan, so I have refused so far. I also realize that nerve conduction is not likely to show anything much in SFN.

I am experiencing no motor changes that I can detect.

The literature (I like literature having always appreciated science and then becoming an RN) talks about idiopathic sensory neuropathies showing up in people's 6th decade.

But I am WHOLE BODY. The literature seems to suggest this is a rare sub-variant.

I get buzzing, itching, burning, some very mild transient numbness , localized small achy spots, transient cramps in my lower abdomen (both sides). And these occur in legs, thighs, backs of hands, backs of arms, flanks, scalp, lips (numbness).

When I put 2 and 2 together again, I realized that it may have all started around 10 months before, the prior summer, with burning in the backs (not the bottoms) of both of my heels. I thought it was a fasciitis, or a tendonitis and never even mentioned it to a doctor.

So here I am. Something that came as pins and needles or burning in the backs of my heels blew up into a whole body neuropathy seemingly overnight around 10 months in.

I am deeply deeply depressed and scared. I can't live. I think about it all the time. My sex life with my wife has stopped. I am letting this ruin my life.

I'll say again, the literature seems to call whole body (or PROXIMAL in addition to DISTAL) rare; more rare than the 2 in 100 that they say all general practitioners see in their day to day practices.

Not sure what anyone can say, but it feels good to write this all down.