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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)

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@joannemm30809

I used to live in Atlanta Georgia for many years but we moved back to where I used to live many years ago and that's Venice Florida. So I'm about 2 hours south of Tampa on the west coast of Florida but just trying to get up 75 and go all the way across highway 4 through Orlando is a nightmare all by itself and then having to get on 95 to head all the way up to Jacksonville Mayo Clinic when they only have one doctor Dr Cheshire that deals with autonomic nervous system problems and then to read so many repetitive over and over and over again negative reviews about this doctor and questioning why can't my neurologist here in Tampa do a small fiber neuropathy biopsy? So I pushed my neurologist and pushed him until he referred me out to another neurologist in Tampa that does small fiber neuropathy biopsies which I should have had this test 2 years ago. All these doctors just want to send you home even though you're begging them for help and telling them it's not all in your head and it's not anxiety yet they send you on your merry way and think that you can survive day-to-day today month after month year after year with debilitating frightening symptoms that come on out of the blue with no rhyme or reason and they affect you from head to toe like they do me get all these doctors just want to send me home and think I can live that way for the rest of my remaining life. That's insane. And I'm finally getting this biopsy done because I had a push and push and push my neurologist and the other neurologist in Augusta Georgia when I was living there 2 years ago he never did this test. So we will see what happens but I'm just fed up with what I'm seeing as a very lame nonchalant quality of care coming from far too many doctors lack of care etc lack of compassion lack of doing every test out there to find out what it is

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Replies to "I used to live in Atlanta Georgia for many years but we moved back to where..."

You may not be missing much and further, be disappointed with the SFN ‘study.’ I had it a couple of years ago and all it did was confirm what I already knew - where the pain was and that nerves were dying for some reason. The results come after probing an area (my feet) with needles and electrodes for an hour. It was tolerable but not very comfortable and didn’t do much other than prove to the doctor what I had outlined.

Once you get (if you do) the SFN diagnosis that is only the start. Now you have to find what is causing it. Be relentless! In order to treat SFN you need to find the cause or you will only be treating the symptoms as you are now. I am on your same path and found a doctor to work with me. I see progress but it is not overnight. This is almost 3 years for me.