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Hi everyone. First of all I'm not diagnosed with SFN... yet. My doctor's oficial word is "sequels of an idiopathic Pure Motor Neuropathy" As you may know idiopathic = no body knows what caused it.

Reading TinaBB's post I can see that she is taking a lot of the "right stuff" for neuropathy issues, and still has some days up some days down. Pretty much like me. In my case: MRI, Blood Works, EMG, NCV, pretty much everything but a nerve/skin biopsy or that sweating test that's used to DX SFN too.

In any case she's still looking for the underlying cause of the SFN(just like me). Being this, pretty much the only real chance to get a cure.

One thing that intrigues me, both from her case and from many other SFN sufferers is this: I read both in her posts and in some replies that SFN is always progressive, and that you will get paralyzed.

And many of this information comes not just from the patients but from the doctors that treated them, many of them as well informed(because of the treatment they gave) as Tina's doc seems to be.

So, after much reading on my own there are some things that I can't digg yet:

1. If you can find the underlying cause(for the lucky ones), and if it's not something progressive itself, like Arthritis, SFN should be, if not curable, at least stoppable. Right? Because my impression on the replies is that SFN is a slowly but surely date with oblivion. Where the only Peripheral Neuropathy that matched that in my many readings was CDIP, and even this could be at least slowed down.

2. On the paralysis stuff. I learned that small fibers don't include motor function(controlled by large fibers), so the paralysis you're talking about comes from the total loss of sensorial function which translates into the inability to move/walk, or that SFN cases do involve large fibers too(motor neurons). I have read that "pure motor issues" often have Small Fiber components and viceversa, but I wanted to ask anyway.

On a side note I have both large and small fibers involvement, the first one confirmed through EMG/NCV test, the last one because of my symptoms, but no doctor named, suggested or tried anything SFN related.

3. Finally, if the neuropathy ends being idiopathic, as most cases in here, judging for the treatment that Tina is trying, I can't see that much difference, from some other people diagnosed with pure motor, or non-specific neuropathy cases. So, in this case what's the difference in being diagnosed with SFN or not. Is there something else that doctors consider, give,or expect? and on top of this. Is there something that can help further(like stopping progression) when SFN is diagnosed?

4. Tina's symptoms seem to come and go in some way(again correct me if I'm wrong), pretty much like me(I mentioned this before). Is this a common behavior in SFN or not? Because from what I've read, many people has at least one symptom/body region that is constantly and permanently affecter.

I took out the pain, which I believe that is the most common symptom, because I'm aware that it's an ever present symptom, and as it is in any kind of pain what works for someone doesn't do the trick in somebody else, and viceversa.

Thanks to all, and the best for all.





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