Junior Member
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Join Date: Nov 2010
Location: Hong Kong
Posts: 40
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Junior Member
Join Date: Nov 2010
Location: Hong Kong
Posts: 40
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sfn is small fiber neuropathy.
what you have to go through is a systematic process of eliminating possibilities until you come to a conclusion. if you suspect neuropathy you should head to a neuropathy centre. This would not be a waste of time. There is one at Cornell University and a neurologist there, Dr. Norman Latov, who has written a book about neuropathy.
Or you could go to a Neurologist now where you live. Maybe there's a good one there.
8 months and many doctors after my feet started burning saw I two Neurologists who both recommended ankle surgery for Tarsal Tunnel Syndrome. I didn't agree with their diagnosis, and was vindicated a month later when I started getting symptoms in my hands. Neither of them recommended testing for B-12. i arranged this myself and discovered I had a very low count. Neither of them suggested that i try to find out why i had low b-12.
I only discovered that i should do this when i saw a 3rd neurologist a few weeks later. the 4th neurologist i saw suggested i go overseas for treatment as there was nobody in hong kong who knew much about peripheral neuropathy. the 5th neurologist i saw said he felt i didn't have PN, but he didn't know what i did have. he only agreed to do some immune testing because i insisted upon it. the 6th neurologist i saw, who works in the same place as the 5th said i did have PN, and ordered more tests, as well as another emg, which seems fairly pointless, as i do not have any loss of sensation or motor function. mine seems to be purely small fibre.
Everything i have learned about this problem has been from doing research on the internet. None of the Neurologists I have seen have been of any use whatsoever.
I have spent a lot of money here on tests that have shown nothing. I am now saving money so that i can head to the USA to a neuropathy centre, wher i hope to at least get a definite diagnosis, and hopefully some good advice on treatment.
Meanwhile the internet, and particularly this forum, is my best source of information. good luck.
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