Small fiber neuropathy?

forgot to mention she did find neuropathy in forearm/right. Isn’t that a wierd place to have it? I thought it stays to legs and feet…

Hi @nemo1, It can be a struggle trying to get a diagnosis and a treatment that helps. What has helped me is learning as much as I can about my neuropathy and possible treatments available that might help which is what I think you are doing also. You mentioned having chronic nerve damage in lumbar and cervical spine which can be a cause of different neuropathy symptoms. Some of the easiest to understand videos I have found to help me understand how the different neuropathies are diagnosed are by Matthew B. Jensen, Assistant Professor of Neurology, University of Wisconsin. You can see all of his videos on his YouTube channel here - https://www.youtube.com/@MatthewBJensen.

If you haven't already seen this discussion started by @jenniferhunter on Myofascial Release Therapy (MFR), you might find it helpful.
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Here are a few other discussions started by members on their journey for a diagnosis that might also be helpful.
--- Diagnosed with Peripheral Neuropathy, or not??: https://connect.mayoclinic.org/discussion/diagnosed-with-peripheal-neuropathy-or-not/
--- Learning Past Cause vs. Quality of Present Life?: https://connect.mayoclinic.org/discussion/learning-past-cause-vs-quality-of-present-life/

Here's a video that might provide some information to help understand what's going on...
https://www.youtube.com/watch?v=kWO8jzsDq-8

Same thing with me numbness in both legs and feet lost all hair from the knees down losing balance a lot. Neurologist eventually the medical assistant told me it was diabetes I have insulin resistance very well controlled never have a A1C above 5.9 always been between 5.7 and 5.9 blood sugar fasting between 106 and 118. When I look it up it always says out of control diabetes. So I think he was not able to tell and just said that must be the problem? I think it's more of a spinal thing affecting the nerves coming from my spine through lower back I'm meeting with a back surgeon to go over options with my spine my last MRI showed a bulging disc in the L5 region so I'll go from there and see what happens.

For those that have SFN, have you tried a spinal stimulator implant and did it help? What have you done that helped with foot tingling? DMSO? CBD? Anything? Thank you!

Hi @retired123, You might want to read through the discussions and comments from members who have shared experiences with spinal cord stimulators - https://connect.mayoclinic.org/search/discussions/?search=SCS+stimulators.

There are also a lot of discussions and posts on tingling feet - https://connect.mayoclinic.org/search/discussions/?search=tingling+feet+what+helps

There are so many paths the various Neuropathies take. For me, my desire to get as much specific information on the exact type or possible reasons is to help connect most with people are on the most similar path as my own. This perhaps helps me prioritize things to try to help me stabilize and improve my mobility. There are so many different symptoms and so many things to try, I like narrowing down the list by borrowing from the successes others have already had and try those ideas first. I also like borrowing from others most like me on what things I might want to avoid.

SFN-affects the organ’s gastroparesis of the stomach, loss of bladder control,, heart either beats too fast or too slow and the doctors have problems controlling blood pressure. One problem for females you no longer feel the female sex organs. Then it affects the pancreas and thyroid. Once it’s in the heart the electrophsiologist gives you approximately seven years left to live. The treatment is IVIG therapy takes at least six months to a year to notice the difference. Once you go on IVIG therapy you remain on it for life. You go off it will progress really fast. It starts working immediately but most people get frustrated because they can’t tell the difference. I am trying to fight to get on it. I have the heart problems, stomach and bladder. Plus chocking problems and it affects the lungs.
I now make myself go to the bathroom every hour.. After having accidents in public it was embarrassing. I activate the timer on my cellphone to remind myself when running around.

I wi look into the links you provided and take your suggestions and research. I just need a place to start. Thank you so much for your help. I appreciate it!

Very interesting…the similarities are uncanny. I think I’m due for more testing. We shall see what they will do. I hope the back surgeon helps you. An odd thing that also happened last summer is my pulse would drop into the 50’s from the 90’s plus. It happened at night when I was having trouble catching my breath with my cpap (when I changed masks it helped the breathing). But the pulse at rest is in the low 60’s. I don’t know how a person goes from 90’s to 60’s for not obvious reason. Until now. Learning the SFN can cause a problem there. Well, I think I need to start with getting a biopsy to see if i have that and if I do I can tell my cardiologist. So much to consider. Feel better.

What is DMSO? How does a spinal stimulator help?