Idiopathic Small Fiber Neuropathy Research

Hi @leslie47, Welcome to Connect. There is a discussion on the topic started by @margaretob but there hasn't been much discussion yet.

-- Urinary incontinence, neuropathy, pain, leg cramps and more: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-pain-in-legs-and-feet/

There is also a somewhat related discussion that may be helpful that discusses a supplement (Alpha Lipoic Acid) that may help with urinary incontinence.
-- Alpha Lipoic to help with incontinence.: https://connect.mayoclinic.org/discussion/alpha-lipoic-to-help-with-incontinence/

Have you been diagnosed with small fiber PN and suspect it maybe causing urinary incontinence?

I am in the same boat. No pain but numbness from knees down and hands. I can no longer touch type or button up a shirt, and lack of balance is a major problem.

his was my diagnosis about 18 years ago. I was told by the neurologist that this won't kill you; see you in 20 years!
My diminishing sense of balance and my lack of strength and stamina in all physical activities are the predominant symptoms causing me to readjust my lifestyle.
Any tips on how to keep more active and safe? I also have osteopenia, high blood pressure and persistent constipation. Does PN affect the muscles of the digestive system?

@allwheeldrive
Depending on the type you have it can affect virtually everything.
Nerves, muscles, one or more, heart and other internal organs, sexual function, weakness to paralysis, constipation, digestion problems and the list is nearly if not endless since there are over 100 types of Neuropathy.
Best of luck,
Jake

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.

Hello @allwheeldrive and welcome to Mayo Clinic Connect. I thought you might benefit from joining a current discussion on the topic of Idiopathic SFN, so you will notice I have moved your posts here:
- Idiopathic Small Fiber Neuropathy Research: https://connect.mayoclinic.org/discussion/mayo-clinic-and-idiopathic-small-fiber-neuropathy-research/

Members such as @lecowing @bb0753 and @dot1 have shared about their symptoms and experiences.

Have you considered a second opinion or would you prefer to go back to the neurologist who originally diagnosed you?

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!

Some of us have gone to many places to find out what's going on and I'm one of them. Why this, why that? I've been to Mayo in MN, Johns Hopkins, several other top-level neuro docs in PA and I think the teaching hospitals have some of the best docs which includes the neuro depts. I feel it is important to have a neuro doc on board with your health care. Who knows what might come along to help you. They also follow the progression and pattern. The right doctor will listen to you and offer suggestions based on your symptoms.

@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!

My GP has recommended a Mayo referral. So far, I am waiting to see if the neurologist np will submit the referral. What process did you go through to get a Mayo appointment? I have struggled with SFN for several years and my GP believes it has advanced to autonomic neuropathy. It is all very frustrating. Many thanks for any helpful tips for getting on the Mayo list.