Initial consultation at a Mayo Clinic

Gabapentin helps my PN when it’s severe, but I don’t like its cognitive effects. I do yoga balance poses daily (look up “tree pose”) which helps balance and if I fall I can catch self. I’ve done a ton of research on PN and not much treatment currently for my type.

Good afternoon @. I see that your request for admission to Mayo/Rochester has been there since April 4. Have you received any suggestions?

Here is the connection I used. It is an online admission application that will be followed within 3 days by a personal phone connection from the admissions department. They will go over the application with you and define the next steps.
http://www.mayoclinic.org/appointments?

On the Connect home page.....in the upper right-hand corner, there is a blue headline that says, "Request an appointment". It took me quite a while to be accepted. The admitting staff has to find that there is more that can be done for your husband's condition and the necessary medical help can not be done just anywhere.

Good luck. I am glad you are being supportive to your husband.
Chris

I am not sure how quickly you want to be seen but went in January and February because of the winter weather it was easier to get an appointment.

Thank you all for sharing your stories about applying to Mayo Clinic.
I have tried too. See below.

Our Opportunity - Hope
Mayo Clinic seizing its opportunity to:
--- Provide leadership for our healthcare system.
--- Help everyone in the system think about the kind of healthcare system we should create for future generations and start changing what we have today.

There is a critical/urgent need for leadership and management of collaborative communication between providers in the healthcare system.
Check out:
- The percentage of physicians in US expressing professional burnout -- Is it 60%?
- The comments made on Mayo Connect - Neuropathy Discussion:
-- Hope - Healing Our Healthcare System for the People's Sake
-- Call for Mayo Clinic Leadership in Healthcare for Neuropathy
-- Collaborative communication between and care by healthcare providers

Applying to Mayo Clinic
Fist of this year, on 2 occasions, I reached out to Mayo Clinic.
I included -- "I need help. I find myself managing my care and multiple providers. Trying to help multiple providers collaborate in helping me prevent stroke and heart attack and overcoming peripheral neuropathy."

Mayo Clinic responded by:
1. Telling me to work with my local providers (who do not collaboratively communicate) - Not good,
2. Encouraging me to join Mayo Connect - Good.

My reason for reaching out to Mayo Clinic was the realization that my local providers (PC Physician, Neurologist, and Cardiologist) do not collaboratively communicate.
(Now I understand they may not be trained in and have time for authentic collaboration.)

Collaboratively communicate about my atherosclerosis (diagnosed 9/2022), the role of Statins in my peripheral neuropathy, and the harm (extreme fatigue) caused by introduction of a new blood pressure medication - Nebivolo.

Last November, I had to go to an emergency room because of extreme fatigue and numbness in my feet and legs.
The ER doctor told me to tell my doctor (I had to facilitate the communication) to stop the Nebivolo and use previous medication. I did, and my cardiologist changed my medication back to Licinopril.

The story continues, as I continually have to help providers communicate about my health.
A process that is not healthy for me.

I do see opportunity for significant improvement in the use of technology to help providers communicate collaboratively and effectively. Not be a bother to them.

Thank you all again!!

Chris - You are right. We live in NJ and they wanted to see me in mid-February, I snapped up the opportunity. I have never been in MINUS 28-degree weather. Yet, my wife and I went with coats, hats, gloves. It got warm, went to 5 one day but I would go again if they would accept me no matter what month. It is an opportunity not avail to everyone. As they say, you won't know until you ask. Ed

I was turned down the first time I tried to go to Rochester. But, I insisted on a neurology consult through a Mayo Health System here in a rural portion of Minnesota. Took me 3 months to get in. But was finally diagnosed with PN on Friday.
Glad you were able to get into very quickly.

Good for you. Were you given multiple tests? Are there any specifics you can share with Connect members? Did you discuss causes or was "idiopathic" the word used to define your type of PN? I notice you use PN so am assuming that you did not get a skin patch biopsy.

How will your treatments change if at all? Do you return for check-ups?

May you be free of suffering and the causes of suffering.
Chris

I only had an EMG so far. I was referred back to the MD that did my EMG ,by my PCP, for follow-up care..
My sister has idiopathic neuropathy. She had an appointment at Mayo in Rochester back in 2016.
She has been my support and biggest advocate! She has pushed me to have the referral in the first place. I will keep all posted on my progress if it is ok to do so.
Pat

Interesting that both you and your sister have peripheral neuropathy. A possible clue?? My guess she is several years older than you. Wish you the best.

My older sister and father also had it.