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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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Hi :)
Hey Billylyne 
I am so sorry for what you are going through and know exactly what you are talking about physically and dr wise. My SFN hit me with a bang one month after my chemo ended. My PCP ran a battery of tests and even had me visit a neurosurgeon to review the MRI of my back and neck. Even though there are problems with my back and neck it was nothing that would cause my symptoms. I then went to a foot and ankle dr who was fairly sure it was SFN. He sent me to a neuro who increased my gaba from what my PCP had started me on and said idiopathic, which is a word I'm not fond of. Still no definite dx. I am one of those types of people that have to have things in black and white.....I researched SFN and then called and asked the foot and ankle dr if he could do the skin biopsy and he agreed. Results said I had severe small fiber neuropathy with 0 and 0.06 on my 2 skin punches.....the scale at Bako Labs is 0 to 15. I cried when he told me....not because it was so bad but because I was so very relieved to know what it was.
During all this I was going for my 3 month cancer check up with my oncologist. He absolutely just brushed me off....when I stopped to see the chemo nurses they said they were not surprised at all. The does of carbo/taxol I was given were pretty high per them. I have since changed cancer dr's.
Everyone is different. I've read of other people with SFN that started in hands, upper legs and places other than the feet. Mine did start in the feet....I'm now having deep aching in both legs and upper right arm. My teeth bother me on and off and also my jaws...usually one at a time. My feet are the worse.
I had to be my own healthcare advocate during this until, of all people, my GYN dr came to the rescue. She was furious that onco had not tried to help me since it was evident the chemo drugs set this into motion.
Hope my story helps some...there will be others behind me giving their suggestions.
Please keep us posted on how you're doing.
Debi from Georgia
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