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Dr. Thomas Chellmsky In Milwaukee..questions


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A year later this began, I'm not any better now than I was then. Physically- the same. . Very low BP, high tachy, lots of syncope, hundreds and hundreds of times. Along with POTS, I have Autoimmune Autonomic Dysfunction/Failure (depends on doctor) Neuropathy, an unspecified Connective Tissue Disease (suspected EDS but major facility I was inpatient refused to test it- acknowledged I had one just refused to test.). Since Oct./Nov. I've been in bed because no one can fugure out how to keep my Bp high enough.

I have about 30-60 seconds until I'm out. I have of organ involvement as well.

Anyway... I think it was someone on this forum who mentioned Dr. Thomas Chellmsky and that he moved to Milwaukee and how helpful he had been. Last week I sent a detailed email describing me and symptoms to the general neuro dept. where he works and I just got a call from his front desk. I guess he is out 9 months for new patients but they already got me registered and he wrote something on the paper with my name and number that he gave to the scheduling specialist that he felt so strongly that I need his help. They can't give me a timeline but they are trying to get me in A.S.A.P. I asked the girl at the front desk if there were any other good neuros who specialize like this the she would recommend- and basically she said- I cannot give you a date but we are going to TRY hard to get you in soon. She also sad "If I were you, I'd be patient and wait for him. He is wonderful, he will listen, and he will likely make you better. I'm sure you will have a marked improvement than you do now." I think I will be patient and wait.

Does any one have experience with him or heard good/bad/I different. I don't just P.O.T.S- I have Autoimmune Autonomic Dysfunction Neuropathy- I know he specializes in P.O.T.S but. It sure about other areas. Thoughts or opinions????

Thank you all!!!!

Jen

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We saw him and his wife 5 times while they were in Cleveland. Our wait in Cleveland wasn't as long so his name must be getting out there. He and his wife were wonderful, but we found a local specialist who used to work with the Chelimsky's so we stopped traveling the 9.5 hour drive. He is very knowledgeable and there are many papers and studies done by him and his wife. He diagnosed my son with POTS and small fiber neuropathy, and we just recently got the missing piece to the puzzle, the MCAS diagnosis.

If you can see him, I would recommend it. I don't think he just works with POTS, he was head of the Autonomic Clinic in Cleveland at Case Western.

Christy

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We saw him and his wife 5 times while they were in Cleveland. Our wait in Cleveland wasn't as long so his name must be getting out there. He and his wife were wonderful, but we found a local specialist who used to work with the Chelimsky's so we stopped traveling the 9.5 hour drive. He is very knowledgeable and there are many papers and studies done by him and his wife. He diagnosed my son with POTS and small fiber neuropathy, and we just recently got the missing piece to the puzzle, the MCAS diagnosis.

If you can see him, I would recommend it. I don't think he just works with POTS, he was head of the Autonomic Clinic in Cleveland at Case Western.

Christy

Christy who do you see that used to work with him?
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he is awesome and he scheduals follow ups every 3 months!

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We see Dr Kinsella in St Louis at St Clare Hospital. He used to work at Case Western University Hospital in Cleveland.

At one of our appointments he actually called Dr Chelimsky on speaker phone and they bounced ideas off each other with us sitting right there.

Christy

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We see Dr Kinsella in St Louis at St Clare Hospital. He used to work at Case Western University Hospital in Cleveland.

At one of our appointments he actually called Dr Chelimsky on speaker phone and they bounced ideas off each other with us sitting right there.

Christy

ah... gotcha thanks!
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Sounds like he could be really good! He seemed really determined to see me but the email I sent him was just listing every ingle symptom I coud think of, and. BEGGING for help. I was shocked to hear back. It just went in this general email account- and before two weeks they had called me.

I pray he will see me and he can help. I hate to be constantly whining - but I have 6 kids- but we are almost pass 7 months in bed. And it's not one of those things I can work out of by myself. I have home PT and OT- they along with my hubby tried the let's get you higher and higher Abd see if you can stand longer- NO progress since Mayo in Dec. My neuro finally said no more. You've have too much syncope, we can't be inducing it. You have already lost 30-40% cognitive function depending on the area . That us unacceptable to me. I'd rather be in bed the rest of my life Abd keep my brain and who I am, others maybe don't feel like that and couldn't it. What I've already loss breaks my heart.

Jeb

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