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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Apr 4 8:41am | Replies (132)

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@allwheeldrive

So, does knowing that PN may be causing the problem, alter the method chosen for treatment of the condition? For example, if PN is causing the constipation, would it be recommended to not bother with a muscle stimulant, because the nerves controlling the peristalsis are defective?
Not one doctor that I have seen has ever seemed to take into account my underlying PN. Perhaps, there is nothing different to do in the treatment, but I would appreciate an acknowledgement that the PN is possibly underlying the presenting problem.

I don't know if its worthwhile to return to the neurologist who diagnosed my PN 18 years ago, if there is nothing to be done.

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Replies to "So, does knowing that PN may be causing the problem, alter the method chosen for treatment..."

I think it’s useful to have a neurologist as specialized eyes on your care, regardless if he doesn’t have all the answers; none of them do when it comes to neuropathy sadly. Sometimes I feel like a ping pong ball - my GI, cardiologist, or dermatologist will hit me back to my neurologist when I have an issue I think falls into their court. Just stay on top and help all of them as much as you can to connect the dots!

@allwheeldrive I had this same question about neuropathy , constipation, and medications for gut motility. I asked my gastroenterologist this, why something like Motegrity would work if my nerves aren’t functioning correctly. His answer was “it’s complicated”. He was not being sarcastic or dismissive, he was being truthful. I had already read some research articles about gut motility, and it was basically like reading a medical textbook. It’s complicated! As I told my gastroenterologist, I don’t need to know all this, he does! Together we are trying different ideas.
One idea I saw here recently is ColonMax. I’m intrigued, and ordered some from Amazon. I may have wasted another $20, but we’ll see!