CarrieJessica Posted April 29, 2012 Report Share Posted April 29, 2012 I go back to the doc on May 7 and need to know where to request a referral to. She is willing to put it in wherever I would like so I was thinking the Mayo Clinic in MN is in my region so I my insurance (Tri Care Prime Remote) will cover it for sure. Does anyone have experience with Mayo in Mn?I was also considering Dr Thompson in Florida but he is out of my area and I am not sure the odds of that approval.Thanks,CarrieJessica Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 30, 2012 Report Share Posted April 30, 2012 We have been to the Mayo in MN and we did all of our original testing at Case Western Univeristy Hospital in Cleveland. I found the doctors we saw in Cleveland to be more thorough, but they are no longer in Cleveland. Dr Thomas Chelimsky is now at Medical College in Milwaukee, WI. Quote Link to comment Share on other sites More sharing options...
Jan Posted April 30, 2012 Report Share Posted April 30, 2012 I found the Mayo in Rochester to be good at diagnosis and poor at follow up. They refused to contact my referring doctor and even when he contacted them he got a one paragraph summary, no future recommendations. When I didn't improve I called the doctor I saw at Mayo and he did not return my calls. I had a friend who went there and he got sent to PT and a cardiologist when he was there and they worked with his PT back home on exercises that would help, and also his assigned doctor referred him to the POTS clinic and who ever he got worked with his home town doctor. Totally different experience than mine. I never got a referral to PT at all, They have a specific autonomic disorder clinic, that specializes in POTS. If you go to the Mayo, have your doctor refer you to them directly. I was referred to Internal Medicine and even though they have this specialty area of the Mayo, the arrogant doctor I was assigned to said he knew as much as they did about POTS and wouldn't refer me to them, and I couldn't go there without a referral. Quote Link to comment Share on other sites More sharing options...
micheller Posted April 30, 2012 Report Share Posted April 30, 2012 I go to Froedtert which is part of the Medical College of Milwaukee. They have great doctors! My neurologist said during my last appt that they were getting in a few new specialists that deal with pots and they have a new support group. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 30, 2012 Report Share Posted April 30, 2012 Michelle,Dr Chelimsky is probably the doctor they referred to. He and his wife, Dr Gisela Chelimsky were both going to Medical College of Milwaukee. They not only test, but they treat their patients. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted April 30, 2012 Report Share Posted April 30, 2012 Didn't have a great experience in MN Quote Link to comment Share on other sites More sharing options...
kayjay Posted April 30, 2012 Report Share Posted April 30, 2012 I found mayo to be very helpful. I went though the POTS clinic. I have a local doctor in PA, but the trip to Mayo was worth it for me. Quote Link to comment Share on other sites More sharing options...
micheller Posted April 30, 2012 Report Share Posted April 30, 2012 Christy, I'll have to ask about them when I go next week. I'd love to see someone a little more specialized. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted April 30, 2012 Report Share Posted April 30, 2012 Jan, I'd agree with your assessment exactly. I have a very aggressive Autoimune Defivpciebce and according to the doctors there basically no autonomic function- Technically, it's called Autoimmune Mediated Autonomuic Dtsfunction Neuropathy. A lot of other more "minor" DX (in their opinion !!!!!) we're made. Ipthey discovered a Connective Tissue Disorder but wouldn't test it because in their minds it is impossible for any connective tissue issues be related to Autonomic Neuropathy and mine is autoimmune- that's that. Finally, I insisted, and I do have EDS Abd said I have Fibromyalgia. Not sure how they even tested for that but I have extreme joint pain- have severe arthritis in both knees- knees, hip Right, and shoulders all dislocate all the time. I've torn many ligaments and at 14 severed all four ligaments in my left knee- which shocked the Ortho. . Saying he'd never sen all corn just totally severed like that like someone cut them with scissors.I was inpatient over 2 weeks at Mayo and left with the words "medical enigma" on my discharge papers, they did every test, had diagnosed me completely but didn't know how to treat me, and that was unusual for them. They tried me on a course of IVIG before I went home- well went to inpatient rehab to get used to the wheelchair, etc,- I was there 2 weeks- my 4th treatment of IVIG put me in anaphylactic shock. Found out thru blood work. Was in rejection- whole body and ogans affected. I was never ever able to contact my another doctor in our local area who will see me because of liability. Right now, I'm looking for another "specialist.'. I may look at the ones in Milwaukee. I'm just tired of jumping around!!!Jen Quote Link to comment Share on other sites More sharing options...
lillybits Posted May 4, 2012 Report Share Posted May 4, 2012 i didnt have a great experiance at mn either atfter going there for one to two weeks at a time for 6 months I finally got diagnosed with pots and ncs. was given a script for midodrine, abdominal binder, given a hand out about pots, ncs . then the dr left. the docs at milwaukee cheminski(sp?) is awesome! he ordered more labs, reffered me out to genetics and told me why and how i have pots. never knew i have vascular eds but now it all makes sence. and i have follow ups in 3 months! Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted May 4, 2012 Report Share Posted May 4, 2012 (edited) My experience at Mayo in Rochester was unproductive. Please pm me if you would want more details.Good luck.Lindajoy Edited May 4, 2012 by corina Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted May 4, 2012 Author Report Share Posted May 4, 2012 I think I am going to try and get the approval for Dr Randy Thompson in Pcola Florida, its out of my area so I am not sure how that will go. If I cannot get to him I will go Mayo MN as a back up plan. I have a great EP cardiologist but he isn't an autonomic specialist, he told me I have POTS but from what I can see my HR didn't jump 30+ but my HR dropped more then 20/10 and my pulse was 42... not sure what that means. Quote Link to comment Share on other sites More sharing options...
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