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Old 03-29-2017, 08:16 AM #10
Healthgirl Healthgirl is offline
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Healthgirl Healthgirl is offline
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Join Date: Dec 2014
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Quote:
Originally Posted by St George 2013 View Post
I'm glad to hear that at least you are getting some information on what's going on with you and your family.

I have SFN but never saw a neuromuscular neurologist. I probably would have been better off if I had

I kinda hate the fact that they want to 'watch and wait'.

Please keep us updated.

Debi from Georgia
to be honest with you, once you already have the diagnosis of sfn, all they do is prescribe the same meds that any run of the mill neurologist offers. This is the order the neuromuscular doctors go with:
nortriptylene, then gabapentin, then lyrica, then cymbalta, then tramadol, possible effexor, maybe flexeril or zanaflex, if relief isn't achieved they will refer you to pain management. Thats it. For autonomic symptoms they will offer midodrine to bring up bp, or fludrocortisone, possibly mestinon.

They check for known causes of PN and then label it idiopathic pretty quickly. They are good at diagnosing, but not at finding a cause and often refer right away to rheumatology. They know about what sfn does to a person better than a general neurologist, but can't do much more than that.

The reason this particular doctor had a more solid picture to present was because of the 3 years of history, files I had forwarded, geneticist, and rheumatology notes- so all she had to do was read through everything and spell it out (which I give her credit for because most doctors just glance at the clipboard before they walk into the room and with this condition that is almost never going to amount to a quality assessment)

So if you have any questions about neurologists, I'd be glad to help. Between the team at Columbia when I was in the hospital and the 7 I have had over the past 3 years, I might have a tidbit or two
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