Going To Mayo On Wed...

[erikainorlando]

My neurologist was not happy with the neurologist's implication at Nameless Tertiary Care Center that my ambulitory problems were most likely psychogenic. So he is pushing me on to MAyo. I go on Wednesday. I am worried about what to do with the results from the previous Tertiary Care center I went to.

My exam at Nameless Tertiary Care Center clearly indicated that I had POTS...and the sweat test showed nerve damage...but she must have gotten confused because she said I only had POTS from the Guillain Barre I had in 01. But I never had POTS symptoms until 2008 after a virus. Clearly I couldn't be walking around working with hr's of 188 for 7 years without any notice of it.

So I wrote a letter back to Nameless Tertiary Care Center and told the neurologist that I thought we were not clear on the chronology of my illnesses...and therefore I wanted the whole autonomic dysfunction thing to be re-evaluated. Along with the name of the counselor I have been seeing for the past couple of years as I try to deal emotionally with this illness.

So do I bring the results from this other very prestigeous place...which indicated my convulsions in the TTT were probably psychogenic? I am kind of leaning toward bring it up directly and getting it right out there on the table. I clearly don't believe that i have a conversion disorder or somatoization disorder. But if I do....let's fix it.

Any thoughts?

Thanks...

Erika

[spaceorca]

My experience with Mayo (both in Rochester and Scottsdale AZ) was that they liked doing their own tests and analyses; they didn't seem that interested (if at all) in previous diagnoses. The downside is that they want patients to repeat a lot of tests; upside is that they may not be influenced by previous centers (even prestigious ones). But doctors within Mayo probably differ--I don't know if our experience was representative.

Is your neurologist writing a referral letter? If he/she takes your symptoms seriously and outlines them to the Mayo docs, that should be enough. The neurologist could either refer to the other tertiary center, saying that he/she doesn't think they got it right, or just ignore that other center. Either way, my guess is Mayo would do their own work.

None of this is to say that Mayo necessarily gets it right--Mayo Rochester missed the boat on my son's dysautonomia/POTS (since confirmed by multiple experts) and Mayo Scottsdale overlooked the amyloidosis that killed my father about six weeks after they said their tests "showed nothing." But I hope they'll get it right--and offer some treatments!--in your case.

[corina]

if i were you i'd just ask them if they are interested as soon as you arrive. that will give you an answer AND get the problem solved for you. i think, like spaceorca, they will run their own tests as to come to their own conclusions.

good luck!

corina