Mayo Clinic experience
 

I just figured I would tell about my experiences there thus far, incase anyone else ever plans on going there.
You can never have too many personal stories of Mayo.

I am going for my PN. (My local neuro had referred me)

My initial appt was 7/28/08.
I live in wisconsin 2 hours away, so I drove over, grabbed lunch with a friend, found parking, checked in, walked around, checked in upstairs, then was seen.

First I saw a resident. He asked me a bunch of questions. (my symptoms)
Then did the typical assessments that we all know. Muscle strength, coordination, etc.

Then I had to wait a while to see the superior Dr. (but I had to stay in my little room)... so I called my sister.

Finally I am seen, and they say my physical assessment was normal (like it was back at home), but they would like to run tests, but I need to come back for those since I am commuting.

They say something about a paraneoplastic pannel. (since I have had 2 months to do nothing but look up peripheral neuropathy, I know paraneoplastic, means cancer related)

Today 7/29/08 I drove back with my father.
I had 2 fasting tests.. not fun considering the drive over is 2 hours. Then the waits for testing is super long.
So I had blood draw, where they literally took probably 10 vials. And then a body CT scan.

I need to go back yet again for an EMG (even though I have had one in my own city)
And then I can follow up with the neurologist with the results, and then what their plan of action is from their (probably further testing is my guess)

I had a terrible day today though. I have bad veins apparently, so I was in much discomfort, and ended up crying 2 times.
I am glad to be back home.

I have also been referred to Mayo and live in N.C. I would like to hear more about your experience as I am not sure what I would gain from going to Mayo.
So far your experience is pretty typical for a large medical center.
Hope the care gets better. Remember make lists, bring a notebook and ask lots of questions. Its your money, your time and your life so don't be shy!
Please keep us informed about your treatment.
Good Luck!

Well, sounds as if you are getting
 

a very thorough workup!
First off, blood draws? In anticipation.....HYDRATE HYDRATE HYDRATE! It doesn't 'dilute' your blood or anything, just makes them easier to 'stick'. Easier = less pain. And those 10 vials are about the right number.

As for running their own EMG and likely other nerve conduction studies? Well, docs everywhere tend not to trust the work of others. They tend only to believe their own equipment and trust that and that only. Don't fuss too much about that.

As for the paraneoplastic bit? I sure wish that my docs in diagnosing me had done that one extra little bit of testing....Why? Because 2 years after I got my immune neuropathy diagnosis I was diagnosed w/breast cancer... They'd not tested, because there were no symptoms. Apparently cancers can start to 'hatch' so to speak up to 5 years before found. Luckily for me, good & regular medical 'maintenance' of my other health areas caught my own cancer very very early. 2 years out from that and everythings under control in the cancer quadrant. Actually my own search for a neuropathy diagnosis made the whole cancer thing a lot easier to handle [honestly the neuropathies are far more esoteric!]. I knew more basic terminology and could find what to learn about my cancer diagnosis when I needed to know more. Don't try and read it all now! Not at all! It mite not be that at all and you shouldn't crowd your mind with 'stuff' you don't need to know until you need to know it.
Honestly it could be something sneaky but simple to address, believe it or not! It can and does happen and I sure hope that's how it works for you.

Hugs and keep at it! - j

Mayo experience
 

Mayo is very very thorough. They have a very important reputation to uphold. The blood draw sounds like they are really giving you a good workup. I agree with Dahlek. Remember all of you,...when you are going to have bloodwork drink liquids the day before. It makes everything in the body produce more of the fluids they need.

If you want some more information about Mayo, do a search for Mayo on this forum. I posted about my entire trip to Mayo back a couple of years ago. Was it worth it? It was for me. I'm no longer searching for the cause of my neuropathy.

Good luck,
Billye

I agree
 

It was very much worth the trip,it's amazing how better it gets,so many
new things.Tests are repeated,this is true and you have the right to cry,
I think I did my share there,but i'm hoping you feel it's as worth it as many of us have. Please keep us up,and thanks for posting. Hugs to all Sue

Hey everyone thanks for reading.

For the blood draws I was on a fluid restriction. It said I could have had up to 8oz of fluid before 7:30am.. but I was sleeping till 6:30am and then I had to get ready to go.
And after 7:30am till the test I had to only have "occasional sips". My blood draw wasn't scheduled till 10:10.. and with the wait, who knows when I actually had it done.

I am guessing I was probably very dehydrated, and that may have been a factor to my vein problem.


I go back to Mayo on friday for my EMG and then I see the neurologist later that day to go over the results of all of my tests (even the EMG results will be back)

I am still very tired and sore today. I can't believe how much of a toll testing and traveling has taken on me.
I am usually an active 22 year old.. but I am wiped.

My plan of action is to just rest up, and rehydrate. Prepare myself mentally for the EMG, cause last time it hurt significantly.

I think if the Dr. says that they want more testing, I may just stay over there. It may be the best route to get more things done quicker.
I didn't have the finances at the end of this month, but I get paid on friday.
So, I may get myself a hotel room... only if push comes to shove. Cause I am not appreciating the 2 hour 1 way drive.

Stay tuned for more.

SILVERLADYCan you tell me more on how to find your thread on the Mayo experience. My search "Mayo clinic" did not bring up your Mayo experience but hundreds of irrelevant pages.
Thanks

here ya go savanah. i used the advanced search feature an dput in silverlady's name, the pn forum and mayo.

http://neurotalk.psychcentral.com/sh...highlight=Mayo

( you might have to scroll fo rthe first post. i have my preferences set to show last post first. )

Mayo might be my next step...the drs around here dont do much for me...the neuros are always saying anxiety and that all is better when pregnant due to happiness when preggo...like I am not happy when not preggo...
and like I wouldnt be anxiety ridden when preggo..after I have lost one baby full term...dont you think these other pregnancies might have a bit of anxiety..

anyhow...if going to Mayo, if the dr lists like to see a immunologist...will they also have me see any dr they think is relevent for my sxs?? thanks for any info...

hugss to all, and thanks for sharing, sarah

I can relate because I traveled about 31/2 hours each way to Cleveland Clinic very draining and painful. I have not been to Mayo but I did send my records there and maybe some others who are far away may be a first step to seeing what they think.
sabimax I may be wrong but I think they reffer you to any relevant docs that may be able to help you. I know they did that at CC. I am sorry about your pregnency. I know too how frustrating it is when the docs put too much emphasis on the mental. I do know it is important to cope but also just coping mentally can't take away the hell pain. I once put a doc on the spot and said how should I feel. Please tell me. You know what he could not.
Hang in there all

sabimax
 

I was only scheduled to see the neuro when I went to Mayo but in her examination she determined that I needed to see others. And I asked to see the dermatologist due to the fingernail problem I have. So yes to your question. All in all when I went to Mayo I saw two neuro's, gastrointerologist, opthalmologist, rheumatologist, dietitian, doctor of physical medicine. I think that is all but not sure.

Billye

How do I get an app't @ Mayo?
 

I've had PN (and possibly a long list of other things) since receiving chemo back in '99. About 8 months before I was dx'ed w/ cancer, I began having leg cramps, spasms, muscle weakness, difficulty walking. I believed I was coming down w/ MS. The internist said I was too old to start having MS so he concluded, from a blood test, that I had a "reactivation" of an Epstein Barr virus. Even though I had never had Epstein Barr, he felt that was my problem.

Fast forward to 2007. Still do not have a definitive dx. I may or may not have the following: PN, CFS, Fibro, Polymyalgia Rheumatica. I had a Paraneoplastic Syndrome test in '07 which came back negative.

In 2007, at my urging, my oncologist sent my records to Mayo. Mayo turned his request down, saying they could not offer me an app't. When I phoned a Mayo intake person, she said the reason for the rejection may have to do w/ the longstanding nature of my sx.

What, if anything, do I do in order to be worked up there? Any help would be wonderful.

personal
 

Antonia,
Try writing a personal medical history with a plea to be seen. Try challenging them in some way to give you an appt. Like tell them you are willing to donate tissue for research and telling them what you would like to have them tell you. Also I'd be curious to know what your B12 test results show.

It seems to me that you have an established cause of your neuropathy. Have you had a rheumatology or neurologist do an autoimmune panel for you?

Billye

Billye, thanks for the response
 

I'm sure I've had dozens of autoimmune panels performed. Back in 2003, one came back w/ a slightly elevated ANA. But the neuro who was treating me then said it was "nothing."

The latest rheumo workup (2007) did show a mild case of polymyalgia rheumatica and when I took prednisone I felt great for the first 2 or 3 days and then the other sx (numb feet, bad balance, burning, heavy legs, etc.)came back w/ a vengeance. So I got off it asap. You can imagine my euphoria when I felt so "normal" for about 3 days.

A couple of years ago I saw the top paraneoplastic neuro in NYC who dx'd me w/ fibromyalgia and suggested a very low dose of elavil. It too did nothing for me.

This all goes to the quest for a conclusive dx which I may or may not get @ Mayo and I intend to follow up on your suggestion. The worst that can happen is that they say "no" yet again.