Jax Mayo Clinic Dr ??

[nelgkel]

I am new to this group and have gotten so much information from this website! I was just diagnosed on April 14th by TTT. I went into the ER on 4-8-09 and was admitted to ICU, it is a long story and right now I do not have the energy or the brain power to type it all out.

Right now i am in the process of being referred to the Mayo clinic in JAX and shared the information about the drs with my EPS cardiologist who diagnosed me. He stated that while he can diagnose POTS he is not a specialist and thinks it would be good for me to go to a specialist.

Who would you recommend?? Dr Fred Kusomoto or Dr. William Cheshire? Who treats POTS more and who is understanding?

I live in central FL and would love to find other POTS patients and their experiences with what DRs helped them best.

thank you ALL so much for any help!

Blessings,

kelly

PS..it is so nice to finally come to a board where others really understand! I have had symptoms for over 4 years and FINALLY got a diagnosis..feels good to know I am NOT crazy!

[maggie]

I was dx with pots in oct 06 at jacksonville Mayo by Dr. Cheshire. I had my first consultation with him after seeing a cardiologist to rule out heart problems. The heart dr told me at the end of testing I most likely had pots and sent me over to Dr. Cheshire. Our first visit went very well. He told me he couldn't get me in right away so I had about three weeks between visits. He instructed me NOT to do any research on pots {I had never heard of this} on the internet, too much wrong information on the subject. If I indeed had it he would take the time to fully inform me on what I needed to know. I did like he said, came back for the tests and was given the dx of pots. I had my consultation with Dr. Cheshire to go over the results of my tests. He gave me my results and that was the end of the session. Since I didn't look into pots before the visit I was totally unprepared to ask any questions. I was so confused and angry that he didn't follow through with any information about pots or treatments. After I calmed down in a day or two I called back his office to get some information and he wouldn't even talk to me. His nurse stated he referred me to my primary doctor. What does he know about pots? This is just my story and Mayo told me they don't treat pots at Jacksonville. I would be very interested to hear how your visit goes and see if you get a dx and if they will treat you. I got excellant care at Mayo, all doctors work together to come to the conclusion of what is the problem, but not after care, what's up with that? I am now seeing a neurologist in Sarasota who has never treated pots. I am a "patient of interest". The only reason he took me on was he has a friend who works for Mayo so if I have problems he can call his friend to find out what to do. I hope you have a better experience then me and if you find a doctor that treats pots here in Florida I would really like to know since I also live in Florida and could use the help.

Maggie

[wareagle]

I don't know anything about Dr. K...but I will share my experience with Dr. Cheshire. I was sent to Mayo at the beginning of my illness. Granted it took months to get in and I had to return on several occasions. On my second visit they did an "autonomic" screening and I saw neurologist. I happen to see the Neuro. BEFORE the results were in and he was "confident" that I didn't have autonomic problems b/c I didn't pass out in his office. Then the results came back...ABNORMAL. So, my internal med. doc who was my "main doctor" during my time at Mayo recommended a full autonomic work up. So I then had to return again to Mayo for this final testing. I was excited b/c I was going to see a specialist, Dr. Cheshire. I had my workup (turns out the full workup was only a 10 minute TTT)...and he dx me with "atypical anxiety disorder". Told me to go home and get on an antidepressent.

Based on my "abnormal" TTT and other symptoms I sought out the opinion of another specialist. I went through another TTT and was dx. with florrid POTS. I really do have a text book case of POTS so I don't know why DR. Cheshire didin't dx. me. It was a really disappointing experience. I was terrified at the time...had NO knowledge of what was going on with my body. Mayo did nothing to help me...other than rule out a bunch of stuff. So, I usually don't speak out about Doctors as I know they are human too. They have good and bad days. I'm sure there are others on here who have had great experiences with Dr. C...I just wanted to share mine.

[worththewords]

Dr. Kusomoto! He is amazing. I was diagnosed at Mayo - Rochester and he knew every single doctor I saw there on a first name basis. He knows a ton about POTS and has a lot of options for treatment. I am stable so he didn't change anything but gave me all his contact info in case something changed and I needed to see him again. I've been to Dr. Grubb and I had the opportunity to meet Dr. Thompson during the documentary filming and Dr. Kusomoto is right up there with those two. I walked out of my appointment feeling very satisfied and he took the time to answer all my questions and concerns. He made me feel better about the future treatment of POTS. I was very impressed with him.

If you decide to see him, make sure you schedule specifically with him.

[erikainorlando]

Hi.

I also live in central florida so feel free to PM me. I see a cardiologist in Davenport. He is wonderful so you may want to see him for follow-up.

I haven't seen either docotr at Mayo but I had a friend who saw Dr. Cheshire and was not all that impressed.

Good luck.

Thanks,

Erika

[Poohbear]

I don't think Mayo would be helpful to you....you already have a diagnosis. Your local specialist needs to understand that Mayo clinic isn't any better at treating this in most cases than he is. That's because it's trial and error. Mayo clinic doesn't follow patients (for the most part) so all they will do is prescribe the top meds that tend to help people the most and tell you to try them. Your own local physicians can do that. Get copies of the journal articles that discuss the medications that are tried for folks with these conditions, read this site and other dysautonomia sites and get your local Dr to start prescribing trials.

If you want to go to Mayo clinic to rule out certain causes or attempt to try to find the root cause then perhaps it's worth a visit but I think you will be disappointed if your expectation is for them to treat you or manage your case.

[nelgkel]

thank you all for taking time to relay your experiences at Mayo. I have been referred by my Electro Physiologist Cardio to dr Kusomoto. I have been happy with my EP Cardio, he is very open minded, very understanding, but only has 5 pots patients, he did about 1,000 TTT to get those 5 and said out of the 5 mine was the worst. my hr went up to 170, felt awful, but nowhere near as bad as I did upon the day i was admitted to the hospital...i wonder what my hr was in wal mart when it all started?

Anyways, thank you so much and I am not sure if I should take the time to go to Mayo or not..I do have a diagnosis, my hope was to find the mechanism of my pots to better treat it.

I have a notebook full of notes that I have gotten online and my dr here locally took the time to look at some of them and said after reviewing them that he learned something new..

Looking forward to chatting with all of you.

blessings

kelly in central FL

[worththewords]

I think you will be happy with Dr. Kusomoto. He's extremely knowledgeable and very understanding. I've had my diagnosis for almost 6 years and I learned a lot from him. It's not often that happens with a doctor! And he will see you for follow-up if you want to continue with him.