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Member
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Join Date: Sep 2013
Location: Georgia
Posts: 905
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Member
Join Date: Sep 2013
Location: Georgia
Posts: 905
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Welcome hibodhi :)
Quote:
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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Nice to meet you 
Coming here was the first time I had ever connected with anyone via internet but sure am glad I did. This is a great place with awesome and caring people.
I too have severe SFN, no A or C Fibers left in my feet. They only did 2 skin punches at my ankle. And yes....looking at the report was very scary ! There are a couple of other people on here that also have zero fibers.
I was pre-diabetic when I had 6 rounds of chemo (taxol-carbo). About a month after that I could barely walk. Most of the dr's say the SFN is from the diabetes but a few agree with me......I already had it to a certain degree and the chemo just sped it up quick and in a hurry. My chemo ended in March 2013.
Totally understand the neuro thing. The one I saw was pretty useless and I don't even see a neuro now. I use my PCP and a pain mgmt. doctor. In the beginning when they found out how bad this was I had 3 different dr's tell me that I needed a pain mgmt. dr......I was so worried about ending up in a 'pill mill' that I put off going until Sept/Oct of last year. That was the best decision I've made since this started.
I've been though all the basic meds they like to give you. I was able to tolerate the gabapentin but only at 1800 mgs a day. Any higher and I start hearing muffled sounds of music and people talking ! Weird to say the least. I was on hydrocodone 10-325 before seeing the pain dr. I'm now on BuTrans pain patch 20 mcg/hr that I change every 7 days and 3 oxycodone a day 10-325.
So glad you found us.
Debi from Georgia
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