Initial consultation at a Mayo Clinic

I already had an initial diagnosis of Anti-MAG neuropathy from Johns Hopkins and wanted a second opinion from Mayo. To my surprise Mayo, Johns Hopkins and the Cleveland Clinic are connected as far as seeing records from the other facilites as long as you authorize. I live in Florida in the winter and tried for Jacksonville and they told me they had no openings, and I couldn't try there again for one year. I then tried Rochester and got in within a couple of months. Went there in February and was extremely impressed with both the quality and compassion of ALL the Mayo staff . Like another patients post here, I got in on Tuesday to primary Neurologist on Tuesday and he ordered a bunch of test that they did on Wednesday and Thursday and then back to primary Neurologist on Friday. Based on the excellent care I am going to keep seeing them in the future and will go back for follow up and chekc on my diesease progression next spring.

Hello @dw9050. If you would like to pursue an appointment request, you may do so by using this link: http://mayocl.in/1mtmR63

@dw9050 - As I posted above, I was fortunate enough to get an appt. You need to be totally honest in all information you provide. They can't see everyone who applies. Think of it this way, you are looking to learn something about the neuropathy. And they too learn a lot more from people who go there. I looked it as a two-way street of information. I went to Rochester not knowing what caused my PN. They could not determine the cause. I also wanted to know more about the PN, what type, what to do reduce symptoms and that information was provided.

Can you share what information they gave you about reducing symptoms? PN in Colorado, Bcool123

@bcool123 - At the time I went to Mayo in early 2020, I was on Gabapentin and had tried Lyrica as well and the neurologist said that with my type of neuropathy not to take either medication, it can actually make my gait worse and neuropathy worse as well. So, I stopped those meds. They also suggested that in order to possibly reduce symptoms to go to physical therapy geared towards balance and I'm still in PT. They also suggested I reduce my weight and walk several days a week. The walking, no problem. The weight....well, I am not that much overweight according to the charts, but I continue to make the effort. In my case, I feel the PT was a very good suggestion. Some of the items I use in PT I now have at home as well.

Thank you for providing your history. Are you feeling better? Are you on any medication?

@dw9050 I am not on any medication related to the peripheral neuropathy. There is no med that I'm aware of that will deal with numbness and balance issues. Feeling better....some areas, my balance has improved since November but going to PT in itself is not enough, I also do home exercises. If I can become stable or slow down the progression, that would be a goal to achieve.

Thank you for your response.
The doctors have prescribed so many drugs for my husband and nothing is helping. I personally think this is not something drugs can fix. I hope you continue to make progress

Progress is difficult. I hope to maintain what I have and for me compared to the past five years, that will be progress. As I posted, my balance through PT is slightly better, at PT they periodically do time tests to measure any progress.' Feet together, eyes open, stand still. They measure time in seconds. Please understand, this isn't easy. For me, keep moving the best you can is vital.

Totally agree!!