1. < Neuropathy

Anyone go to a Mayo Clinic for neuropathy?

Posted by wisfloj @wisfloj, May 30, 2019

I’m just wondering if anybody has gone to a MAYO clinic for assessment, evaluation, a specific diagnosis and hopefully treatment? It has been in the back of my mind as my next and final step since it is feasible to drive to the Jacksonville location as I am in Tampa, Florida. (PN in feet, legs, hands and arms)

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

bettyg81pain | @bettyg81pain | Oct 14 8:35am
In reply to @felicelinda "Hi rwinney, Did the Mayo Clinic after they did the tests help to reduce your neuropathy..." + (show)
@felicelinda

Hi rwinney,
Did the Mayo Clinic after they did the tests help to reduce your neuropathy pain? If so, what did they do? TIA

Jump to this post

That’s what I want to know-what did Mayo do to reduce ur pain?

REPLY
bob1946 | @bob1946 | Oct 14 9:09am
In reply to @njed "@rwinney Hi Rachel - Like you, I had lots of testing done for 3 years at..." + (show)
@njed

@rwinney Hi Rachel - Like you, I had lots of testing done for 3 years at 3 teaching hospitals and had all of the written reports. Idiopathic, all three. I decided to apply at Mayo Rochester. I sent all reports to Mayo with a letter implying that perhaps I could be a challenge for their doctors. I tried to give them a solid reason to accept me. Was accepted in Nov 2019, went to Mayo Feb 2020 prior to pandemic and I am sure back then the staffing was greater prior to the pandemic. Mayo said idiopathic as well however, they did some tests that the other hospitals did not do. If turned down, I would apply again after 9 - 12 months and provide any changes in condition from the prior application. Nothing to lose and don't get discouraged.

Jump to this post

You said that you went to Mayo, what were the results. I have lower back problems for quite some time. They come & go. But 5 years ago I was diagnosed with peripheral neuropathy. In addition I developed drop foot which has worsened. I have no pain problems, just balance & numbness.

REPLY
NJ Ed | @njed | Oct 14 1:16pm

@bob1946 - My symptoms match yours - numbness, no pain, poor balance, I have bi-lateral drop foot and must wear ankle foot orthotics, progressive and clearly idiopathic. Mayo did a huge number of tests way too many to list - 15 or so?? Prior to going, my thinking was lower back issues causing the PN. Diagnosis was sensory motor PN both large and small fiber. They could not give me a cause and suggested some genetic testing and PT. I decided against generic testing. I did get a test for CMT, negative. PT did help for a while but could not show improvement, so I had to step out. Improvement is necessary for insurance to pay which to me is nuts. Ed

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 14 3:06pm
In reply to @hsrikantan "Yes, I am highly interested in getting details on "May Clinic on Neuropathy/chronic pain" program, if..." + (show)
@hsrikantan

Yes, I am highly interested in getting details on "May Clinic on Neuropathy/chronic pain" program, if they have one????
BTW, any official from Mayo clinic monitor these discussions or they just host this platform / hub for individuals communicate/ exchange information?
Currently just get random responses from individuals i.e.: Helpful, Hugs etc. Although this is very nice, it really does not help / contribute to addressing real issues / suffering of patients like me!
Thank you,
Hossur Srikantan

Jump to this post

@hsrikantan, Mayo Clinic Connect is an online forum where patients and caregivers share their experiences, find support and exchange information with others. You can read more about Connect and how it is moderated here:
- About Connect https://connect.mayoclinic.org/blog/about-connect/tab/aboutconnect/
- Why and how it is moderated https://connect.mayoclinic.org/blog/about-connect/tab/moderators/#ch-tab-navigation
- Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/#ch-tab-navigation

REPLY
bajjerfan | @bajjerfan | Oct 14 7:30pm
In reply to @lewin "Thank you so much. How do I find out which plans they accept? I am in..." + (show)
@lewin

Thank you so much. How do I find out which plans they accept? I am in my local hospital plan. Don't you also need a referral from your doctor?
Thanks again.

Jump to this post

It says on their website that referrals aren't required.

REPLY
View MoreView Less
Please sign in or register to post a reply.