Any recommendations for a neurologist at Mayo in Rochester MN

Posted by ktgirl @ktgirl, Apr 25, 2021

I am considering seeing a neurologist at Mayo for my peripheral neuropathy and don't know where to start. Seems like there are lots of neurologists there. Some have D. O. after their name and some have PhD's. Has anyone here had especially good luck with anyone in particular? I am having surgery there on my elbow May 7 and since I can't get any feedback from my neurologist here I thought I would try someone there. Any suggestions would be appreciated!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Lagrange 5 | @lagrange5 | May 27, 2023

Idiopathic means "We don't know". There are medical professionals who are critical of the term, because it rules in nothing. Peripheral neuropathy is a growing phenomenon that is getting worse and is engendering treatment traction that is way too slow. There are so many causes that it becomes a very easy answer on a medical school test. There are now so many cases that appointments are heavily backlogged. We can't blame all backlogs on the pandemic. Getting to the actual cause of idiopathic peripheral neuropathy means more extensive testing than "standard testing". It means testing that is not covered by insurance. It means staying with the patient, instead of sending them back to the original referring doctor, who is answerless. It means finding the right specialists in the right medical system. Mayo Clinic has the people and the resources to do so. I hope they do. If not, someone else will.

margaret10 | @margaret10 | May 27, 2023

I am making some headway in determining the cause of my CMT2. My local neurologist ordered a whole genome sequencing test for me to find any mutated genes that could account for my symptoms. (You don't have to go to the Mayo to get the test ordered (Centogene sequenced my genome), but it must be ordered by a physician.) Turns out I have 2 heterozygous mutations that affect my mitochondrial function: SDHB and FBXL4. The bottom line is that the mitochondria in my cells are not able to produce enough energy (ATP) to meet cellular demands for proper functioning. Eventually, the mitochondria fail and the cell dies. Get on google scholar and search mitochondrial neuropathy for more info. Also, UMDF or the United Mitochondrial Disease Foundation, has lots of info re the various diseases that can be caused by mitochondrial depletion.
If your insurance doesn't cover whole genome sequencing, it could cost about $6,000. I recommend that you get whole genome sequenced, not exome sequencing, and ask for incidental findings, to get the most productive report you can. Of course, the cause of your SFN may not be genetic. It could be autoimmune or nutrient deficiency (e.g. B12), etc. Good luck!