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StormBeforeCalm

Non length dependent small fiber neuropathy?

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I have just been diagnosed with non length dependent small fiber neuropathy. (See rant at http://www.crazyboards.org/forums/index.php?/blogs/entry/73508-my-thoughts-on-the-medical-profession/.)

Looking for anyone with the same condition. There's very little information on the Internet and my doctors are pretty much useless.

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I have, and some of the information in there is inconsistent with what I've read from more authoritative sources, unfortunately. I spent a good chunk of yesterday reading more about small fiber neuropathy in general, instead of just looking for info on my variant, and nothing I read was encouraging. Most folks have pain from the neuropathy, so treatments are heavily focused on suppressing pain. That's good, but I also have motor and autonomic issues in addition to sensory. For example, my blood pressure keeps skyrocketing for no reason, and sometimes I have trouble swallowing. I can't find anything about treating those issues.

I think what makes me so nuts is that I've been diagnosed by two neurologists as having an incurable and largely untreatable disease, but neither of them has made any effort to help me with what treatments are available. They seem to think that my situation is no big deal and that I should be fine with living with these symptoms without any treatment or further investigation. Meanwhile, I continue to get worse from week to week, and I wonder what is next.

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NeuroTalk (by PsychCentral) and BrainTalk Communities are the two forums that stand out from memory, but beware of the massive amount of cyber hugs. If only there was a Forum like this for Neuro ;) 

I'm sorry you are going through all this crap with doctors, treatment, and mystery diagnosis Storm. I hope you find some answers and treatment soon.

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5 hours ago, Velvet Elvis said:

I can't find the one I used to be aware of, but you'd be better off asking on a forum specific to neuro disorders. 

 

I know, and I've been checking those out. My interest in asking on CB is that the primary treatment for this form of neuropathy is typically antidepressants and other psych meds. So far my neurologist and GP have come up with two ideas to help with my pain, and my pdoc has shot them both down because they affect serotonin and may have nasty interactions with my existing meds. I'm looking for a new pdoc (since mine is moving next month anyway) who is familiar with neuropathy treatment and might have some non-psych med suggestions for me.

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