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.

djallan | @djallan | Jul 8, 2019

Hi! On May 12th I flew from Portland OR to Jacksonville FL to start a 3 week lung transplant evaluation. Then 2 weeks later I returned for a iliac artery stint, returned home to Portland last Saturday. The evaluation was the most intense series of test for the whole 3 weeks. All of the staff were the most professional I have ever come across. I had a team of about 23 that took care of me. It was the best experience that I have ever had. Everything was through and on time.
My wife & I actually enjoyed ourselves the whole 3 week. Upon our return for the surgery it was the same great experience.

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1 reply
wisfloj | @wisfloj | Jul 8, 2019
In reply to @djallan "Hi! On May 12th I flew from Portland OR to Jacksonville FL to start a 3..." + (show)
@djallan

Hi! On May 12th I flew from Portland OR to Jacksonville FL to start a 3 week lung transplant evaluation. Then 2 weeks later I returned for a iliac artery stint, returned home to Portland last Saturday. The evaluation was the most intense series of test for the whole 3 weeks. All of the staff were the most professional I have ever come across. I had a team of about 23 that took care of me. It was the best experience that I have ever had. Everything was through and on time.
My wife & I actually enjoyed ourselves the whole 3 week. Upon our return for the surgery it was the same great experience.

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I know this is the neuropathy group but, My brother is on the waiting list at Barnes Jewish in MO for a double lung transplant. (Alpha 1 Deficiency) best of luck to you. I know the testing, repeated evaluations etc. are rigorous. Glad you found competent care

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1 reply
djallan | @djallan | Jul 8, 2019
In reply to @wisfloj "I know this is the neuropathy group but, My brother is on the waiting list at..." + (show)
@wisfloj

I know this is the neuropathy group but, My brother is on the waiting list at Barnes Jewish in MO for a double lung transplant. (Alpha 1 Deficiency) best of luck to you. I know the testing, repeated evaluations etc. are rigorous. Glad you found competent care

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Thanks!!!

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ggs | @ggs | Dec 30, 2020
In reply to @johnbishop "Hi @wisfloj -- I just posted that I was diagnosed at Mayo Clinic Rochester in another..." + (show)
@johnbishop

Hi @wisfloj -- I just posted that I was diagnosed at Mayo Clinic Rochester in another discussion here: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/?pg=1#comment-302813

Hoping that others who have been to Mayo Clinic for neuropathy will also respond here or in the discussion above.

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I am taking my husband to Rochester for his appointment the end of January. He has fallen 5 times since the end of September, been in & out of the hospital here, had too many tests to count, seen numerous type of doctors...but finally the neurologist made a referral to the Clinic. The doctor told him he was a zebra in a medical treatment that only treats horses. I’m concerned on a couple of levels: 1) with his neuro issues he’s unable to travel by plane so we’re driving their & 2) driving that far in the winter...but we have to get a diagnosis!!!

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2 replies
steeldove | @steeldove | Dec 30, 2020
In reply to @ggs "I am taking my husband to Rochester for his appointment the end of January. He has..." + (show)
@ggs

I am taking my husband to Rochester for his appointment the end of January. He has fallen 5 times since the end of September, been in & out of the hospital here, had too many tests to count, seen numerous type of doctors...but finally the neurologist made a referral to the Clinic. The doctor told him he was a zebra in a medical treatment that only treats horses. I’m concerned on a couple of levels: 1) with his neuro issues he’s unable to travel by plane so we’re driving their & 2) driving that far in the winter...but we have to get a diagnosis!!!

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@ggs Where are you driving from? Be sure to keep a careful eye on the 10-day weather forecasts along the route you'll travel, and if it's snowy, be sure to stay on main roads that will be plowed. I've driven back and forth from Springfield, Missouri, to Rochester several times.

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Amanda Roe | @amandajro | Dec 30, 2020

Hello @ggs and welcome to Mayo Clinic Connect. I understand your husband has been referred to Mayo Clinic in Rochester, MN and you plan to travel here in the coming weeks and are having concerns about the drive in the winter.

Like @steeldove has already asked, I'd be curious about from where about you are driving in case other members can provide any feedback or suggestions.

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mechanicjesus | @mechanicjesus | Dec 31, 2020

I also had a referral to Rochester and was turned down. Said they didn't have anything to offer that I hadn't tried or was doing.

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ken82 | @ken82 | Dec 31, 2020
In reply to @ggs "I am taking my husband to Rochester for his appointment the end of January. He has..." + (show)
@ggs

I am taking my husband to Rochester for his appointment the end of January. He has fallen 5 times since the end of September, been in & out of the hospital here, had too many tests to count, seen numerous type of doctors...but finally the neurologist made a referral to the Clinic. The doctor told him he was a zebra in a medical treatment that only treats horses. I’m concerned on a couple of levels: 1) with his neuro issues he’s unable to travel by plane so we’re driving their & 2) driving that far in the winter...but we have to get a diagnosis!!!

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@ggs I am not sure where you are starting out on your trip to Rochester, MN.. but The Interstate 4 lane Highway across the Bottom of Minnesota is very well maintained and sizable towns are not too far apart... The Airport for Rochester is out on the South edge of town ... the 4 and 6 lane Highways from the Interstate are easily navigated... Mayo is in the Center of Rochester.. there are many parking ramps and a Tunnel system for walking in the weather.. The Secret of Winter driving is use the Interstates and if the weather closes in ... Stop... don't think that you can get through... the Hotels close to the Interstate are easy up through Iowa or from Wisconsin.... There are many hotels across the street from Mayo.. but they are also connected to the main Clinic Buildings (Gonda and Mayo) ... there are drop-off entrance areas that have canopies ... and the Hotel Shuttle systems can get you to the Clinic and back easily... They are used to helping handicapped persons with all sorts of special needs.. There are restaurants and such very close ... I am not sure if the Restaurants I used are still there ... but Mango Thai...great.. Casablanca... outstanding.. they have all sorts of wheelchairs around that can be used.. Once you get there no problem... Good Luck.. K

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Mentor
Laurie, Volunteer Mentor | @roch | Dec 31, 2020

ggs @ggs,

I dove from Rochester to NC last winter, the key is flexibility. Keep close eye on weather and if forecast looks like future storm, come early. Lot less stressful if arrive few days early then worried about getting stranded on road. Also I looked at alternate routes, sometimes it is better to take longer route that has better roads then shortest distant.

If not use to winter driving, make sure you have few supplies in your car. I live in MN and from Nov to April I always have extra winter gear and supplies in car just in case.

MN DOT has good suggestions on their website, the one thing not mentioned is extra wiper fluid, if run into slushy roads you may need extra.
https://dps.mn.gov/divisions/ots/educational-materials/Documents/Winter-Survival-Brochure.pdf
Have safe trip

Laurie

REPLY
1 reply
cwm1 | @cwm1 | Dec 31, 2020
In reply to @roch "ggs @ggs, I dove from Rochester to NC last winter, the key is flexibility. Keep close..." + (show)
@roch

ggs @ggs,

I dove from Rochester to NC last winter, the key is flexibility. Keep close eye on weather and if forecast looks like future storm, come early. Lot less stressful if arrive few days early then worried about getting stranded on road. Also I looked at alternate routes, sometimes it is better to take longer route that has better roads then shortest distant.

If not use to winter driving, make sure you have few supplies in your car. I live in MN and from Nov to April I always have extra winter gear and supplies in car just in case.

MN DOT has good suggestions on their website, the one thing not mentioned is extra wiper fluid, if run into slushy roads you may need extra.
https://dps.mn.gov/divisions/ots/educational-materials/Documents/Winter-Survival-Brochure.pdf
Have safe trip

Laurie

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I go to Mayo in Jacksonville. I highly recommend it. Trying to get in the ER in the evening is a nightmare with Covid and hospital is full so you have to go there first

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