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im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 - do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?
Replies to "im in nyc so there is a wide range of drs. the problem is finding a..."
Have you looked at any University hospital? I went to the one in Portland, OR, because my neurologist said they could do tests that are only done there.
I live in central Oregon, about a 3 hour drive for me.
Jim
Not for nothing but I was the reverse of you!
Started with chronic pain in neck and head. Numbness from shoulder down arm.
No basic treatments or techniques helped. 3 spine surgeons all said no surgery. PCP never understood why with only 2 bulging and 1 herniated cervical disc I was in so much pain.
On to Pain Management for occipital and cervical nerve blocks then radio frequency ablations for 2 years. PM could not understand why I continued to have such burning through my shoulders. I felt aged beyond my 46 years and decrepit.
Neurologist #1 failed to diagnose chronic migraine during all this as he was focused on my neck problems. That too was haunting me.
I passed EMG/Nerve Conduction studies. Ruled out Fibromyalgia with a Rheumatologist. My strength was never an issue. Hmmm...PCP said let's try Cymbalta (my anxiety and patience were thru the roof). Then, let's try gaba, then Lyrica.
I finally said screw Neurologist #1 and found a new one referred by PM who properly diagnosed me with chronic migraine and could not believe no-one else had!!
2 and 1/2 years passed now and more pieces of my body began to act corrupt. I got a weeding injury to my hand. Yes, as in pulling weeds!! I got a walking injury. Yes, God forbid I took a slow calming walk for my migraines. Went to Orthopedic Dr. and xrays were fine, they put me in splint and walking boot.
It progressed to palpitations, out of breath, exhaustion, dizziness, sweats, tingles, zaps, vibrations, sun burn sensations, stabbing pains, weakness etc... Pain, pain, pain.
I went to neurologist #2 and said...IM GOING CRAZY, SOMETHING IS WRONG WITH ME NEUROLOGICALLY AND IF YOU DONT FIGURE IT OUT IM GOING TO MAYO CLINIC!!!!
And FINALLY a skin biopsy was done and SFN was diagnosed with a B12 deficiency. A day late and a dollar short.
Mind you, most of the trouble shooting was my doing. Advocate for your self. You aren't crazy and if you were diagnosed with SFN 10 years ago and it may be acting up now then that's a decent stretch for you but don't rule it out, it can cause havoc.
It's hard and I live in NY but not NYC. Must be tougher with so many Dr choices. I don't see why you don't have the right for a biopsy test again unless insurance denied. I hope you can find the help you need soon. Don't settle.
My confusion with SFN is navigating it's wrath verses knowing if something new presents itself. Confusing!
I will attach a statement from the book my Nurologist helped to write on SFN which concludes possible confusions.
I wish you well.
Rachel
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@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy