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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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Hey canagirl :)
Quote:
Originally Posted by canagirl
I thought small fiber neuropathy as well (b/c what else can cause all these symtpoms?!!!?) However, the neurologist doesn't feel I have this b/c her clinical testing shows no evidence. I'm trying to get the test done on my own but it's really expensive $2000US dollars. Not only that, this test isn't performed here in Canada, there are twp dr's that will perform the biopsy and send it to the US but trying to get in is impossible.
Has anyone else been diagnosed with SFN when their neurologist said "I don't think so"?
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I had chemo for a rare uterine cancer....the chemo was a combo of taxol/carbo. They said I was pre-diabetic going into this and the chemo jumped my A1C up to 8.7. A month after chemo ended I could barely walk. That was in May 2013.....had to be my own advocate after PCP ran all the normal tests (complete blood work for neuropathy, back x-rays, neck MRI, and the 2 nerve tests, can't remember the names now) I knew absolutely nothing about neuropathy and the nerve specialist that ran the tests was really snarky and said I had very mild symptoms within the normal range. I was in so much pain and had no idea what to do. Went to a foot and ankle dr....he agreed with the PCP that it was neuropathy caused by diabetes/chemo. He was the first dr I saw that mentioned small fiber neuropathy. I read about it and called and asked him to do a biopsy. I was crazy at that point to find out what was wrong and give a name to it. My PCP had put me on a small amount of gabapentin and was giving me hydro. The skin biopsy confirmed severe small fiber neuropathy. I had no A and C fibers left in my feet.
So the journey began.....I started seeing a neuro (we are limited here in neuro's and I was not fond of this one) I could no longer drive and had to (still have to) sit in the back seat with my feet up off the floorboards (the vibrations of the car set my feet off). I got up to 2700 mg of gabapentin and started hearing voices in other rooms......muffled voices and music.....I had to go back down to 1800 mgs a day to get rid of this side effect which was very unsettling.
I stayed on the hydro (against my neuro's advise) and then he added Cymbalta. It also caused mental issues if I got above 30 mgs. But I stayed on the 30 for awhile because it helped clear my head which was always foggy. Then he tried Lyrica....that gave me a horrible stomach ache. Like you have as a kid when you eat too much cotton candy. He made me stay on it 3 weeks because he said he had NEVER heard of this side effect....well it didn't go away until I stopped the Lyrica. During the Lyrica phase I came off the gabapentin. Then I had proof the gabapentin helped some so I was able to go back on it after I came off the Lyrica.
I was told by 3 dr's that there was nothing else to be done except pain management. All suggested I go to a pain mgmt. clinic. I finally broke down last Sept/Oct and went. It was the best decision I have made since this started. He started me off on a BuTrans patch at 5mcg/hr with Percocet for breakthrough pain. I've titrated up and will start a 15mcg/hr patch this Saturday. I have to use the Percocet everyday so it's really not for breakthrough pain at this time but part of the pain plan. We're working toward getting the patch up to give me enough relief that I do only use the Percocet for breakthrough pain.
It's a slow process but I have gotten some pain relief from this mixture of gabapentin, BuTrans patch and Percocet.
My pain dr seems to think my best bet will be a SCS. I am not ready for that and may never be. Scares me to death to think of having something implanted in my back.
Sorry this was so long and thanks to anyone brave enough to read this small novel.
You people are amazing and even though I don't post a lot now (due to pain, depression) I do follow everyone on here.
Personal info: female, will be 53 in May, married to Bubba for 35 years, 2 grown children and 6 grandchildren, 2 chi-chi's (Charlie and Angus) and Bob.....my 20 lb cat ! Also outside cat "Black Kitty" because I never gave him a name...lol....Filed for disability and was approved in 2013. And St George Island is my favorite place in the whole world.
Debi from Georgia
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