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Originally Posted by hibodhi
Hiiii
I apologize in advance haha
I have never posted on a website before and I'm not exactly sure what I'm doing... No lies, it also feels terribly awkward!!
With that being said, I registered yesterday to hopefully get some suggestions, tips, opinions... Absolutely any sort of knowledge or insight is welcome because I'm so lost.
I'm 29 years old, female
Three months ago I was diagnosed with "non-length dependent small fiber neuropathy" after skin biopsy results (ankle and thigh) showed there were zero nerve fibers left in both locations. I have pain consistently in my legs but also random attacks on my face, scalp, ears, collarbone, upper back, arms, and stomach. My neurologist does not seem to be very concerned but I'm feeling the polar opposite of that. During my most recent visit, I explained my newest symptoms and was told that it is progressing to my autonomic nerves. My next appointment is not scheduled until mid March... Should I be concerned? Gut feeling, I think so!
Thanks so much for any response!!!
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Polar opposite, most of us know that same emotion. the Dr acts as if it's nothing and you are in a panic. Sorry this has befallen you. Did he or she prescribe any meds(RX) for help with the leg pain? Is the leg pain a deep pain or a shallower zapping, stinging, burning type? There are many things that cause SFN and knowing the cause helps to know a particular thing to work on such as toxins or Chemo induced. I am diabetic with Periferal Neuropathy and although it is not SFN there are many similar treatments and symptoms. Most everyone regardless of diagnosis(DX) knows their b-12 number. 400 is the low end of acceptable and 900+ is optimal. There is no fast way to gain patience, but it will come in time. Next appt in March? See there it is already. If you lurk and read and use the search function(at top of page in toolbar) and use at least 4 charachters you can find an absolute overload of info. I would like to say that we all here are not Drs so if you read something that you want to do, it is recommended that you consult your Neurologist first. Myself , I am 2.5 yrs down the road and at one point was pushing a walker taking Hydrocodone 10-325 plus Tramadol plus sleeping pills plus Gabapentin but am happy to say that now all I take are diabetic meds and no walker. Did you catch the 2.5 yrs down the road. There is where the patience comes in.I hope you can fight the panic that I know you are in so write us back and tell us more. Good Luck, Ken in Texas. "Let us not talk falsly now, the hour is getting late"-- Bob Dilan