Responsive doctors at Mayo

Hey John, are all your docs at Mayo, including your PCP? Where do you live in Minnesota and go to Rochester Mayo?

We live in a small town west of Rochester. My primary care doc is part of the Kasson Mayo Family Clinic. Routine appoints are in Kasson. The referrals and out of the ordinary stuff is at Rochester Mayo.

Good point, Chris. Thanks!

My neuropathy is getting so bad, that I am thinking of trying to go to Mayo Clinic for help. I have already gone to Cleveland Clinic, Penn State Hershey, and Johns Hopkins for help, with no avail. I thought I heard a while ago that it is very hard to see anyone due to too many patients. How do I get started with a doctor and who is the best doctor(s) to see? I live in central Pennsylvania, so it will be a long trip for us. Any help would be greatly appreciated.

@cwallen9 -- I'm sorry to hear that your neuropathy is getting worse. You mentioned in another post that you have high vitamin B6 levels and that you have stopped taking supplements with B6 late last year. Have you discussed B6 toxicity with your doctor?

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@cwallen9. Some depts are virtually impossible to get appts at. But reading where you have been, I doubt that Mayo can be of much additional help. It seems to me this this isn’t something that there are a lot of good answers for. I would think that those drs you’ve already seen would be as widely informed as those at Mayo.

John, I have. The neurologist at Hershey Medical Center noticed that the B6 levels were high and said to go to a nutritionalist. We made an appointment with one in our home town (small town), and she said that there was no use in seeing her since she didn't know any ways to reduce B6 levels! I have asked other doctors and they don't know either. Thanks for the B6 references - I will check them out. And I will check out the Mayo Clinic contact site. You guys are always a great help and are a great service to all of us suffering from the hell of neuropathy.

Well, I am pretty desperate. My pain keeps increasing and spreading to all parts of my body. I was hoping they would at least have some ideas on how to reduce the pain somewhat. None of the other doctors seem too interested in suggesting some of the things that everyone talks about on this site. Have you gone to Mayo Clinic? Have they helped you?

I was diagnosed with idiopathic small fiber peripheral neuropathy at Mayo Rochester and because I have no pain but only have numbness there were no answers for me. So I started searching and found what has helped me slow and hopefully stopped the progression of my neuropathy. I take a protocol of vitamins and supplements that have helped me keep my neuropathy at bay and I can sometimes forget my numbness in my feet but it's still there. I have been taking them for over 2 and half years and my PN is still being held in check. Others who are in the group have been given a new life of relief from pain. I don't know if it will work for you but it has helped me and many others.

This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

@cwallen9 You might want to look at myofascial release therapy. Here is our discussion with lots of information links. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I've done MFR for a number of years and it can help get things moving in the body that get stuck. The fascial tissue can also hold onto toxins and when that tissue is released, it can release and rehydrate the tissue so things can circulate. I don't know if it helps B6 toxicity, but it's a form of physical therapy. There are also massage therapists who do lymphatic drainage massage, and many also are MFR therapists. The Lymphatic system is involved in carrying waste products from the body for excretion. When muscles and tissues are tight, it puts pressure on nerves and MFR can help that. You can also take epsom salt baths to detox. You'll absorb magnesium which is needed for detoxing, and most of us are deficient. A functional medicine doctor can evaluate these kinds of things. There is a provider finder link for them at https://www.aaemonline.org/find.php