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Potsluck007

Question On Mayo And Vanderbilt

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Gemma, I'm in PA as well and I'm going to look at going Rochester Minnesota Mayo Clinic there. I have a appointment at Vanderbilt in February I like to see if I can get into Mayo Clinic in Minnesota. I live in the center Of Pennsylvania. Right below Harrisburg. I think that driving may be 17 hours. If I fly I think it's two hours I have to check with my doctor. If you scroll up I think Jackie went to Rochester Minnesota to Mayo Clinic .

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Gemma You might want to check into seeing a specialist down in Baltimore Dr. Korona I think that's his name I'm seeing him in November. he is like seven months out. But he's pretty close to us. He is like an hour away from York. I heard he does all his test in his office. he takes his time with this patient is very good I heard I don't know I haven't seen them yet.

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Thanks potsluck i am going to call them. Baltimore is only like 3 hours away. I am also seeing this doctor in NY, Dr. Weimer. He is from columbia nuerological department. He supposed to perform autonomous testing for me. For now he just did an antibody blood test. I have hopes in him as well. Can you PM me about your visit in november. Thanks.

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His full name is Dr. Ramesh Khurana he practices at Union Memorial and John Hopkins. When I called the first time and spoke to his assistant he called me back and made sure I was added to the wait list as well which I thought was nice. He's a neurophysiologist 410-554-2286 was the number I called. I am excited to learn more about what is going on and from what I understand he's pretty knowledgeable in this field but I haven't seen him yet. I actually got his name off of a post from the forums.

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Hi everyone. I'm just curious but do you pay with a health insurance when you deal with Mayo, Vanderbilt, or any of the above mentioned clinics? I do not have health insurance right now and not a whole lot of money so I'm sort of stuck in the dead end, but trying to manage thanks to advice and tips.

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Okie, I do have insurance that I used with Mayo. Of course, I have a big deductible that had to be paid, too. I am not familiar with how they deal with cash/no insurance patients. Maybe someone can recommend something for you to do in dealing with them under that situation.

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Hi okie,

Most medical facilities will offer a reduced fee for cash account patients. You should call Mayo and ask them what kind of arrangement they would be willing to make for you. I had Medicare when I went to Mayo and was responsible for 30 % of the bill because they only have a partial Medicare contract. I am presently on a Senior HMO which Mayo does not accept so I will have to switch back to Medicare in October so I can go back to Mayo. I hope you can work something out.

Janet

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In case anyone was wondering I ended up on Medicare because after 2 years of being on disability I was automatically enrolled in Medicare and no longer qualified for the expensive COBRA insurance coverage I had been on since losing the ability to work.

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Thanks janet and sue! I think I'll be able to get employer health insurance soon after my father gets it. He's about 1 week away from being able to obtain it (after 90 days).

Did anyone fly to get to Mayo, Hopkins, or Vanderbilt? Or luckily lived close by? Those are insanely popular choices that I've noticed alot of POTS/EDS/MCAS patients (on this forum anyway) seem to be going to. I live near the "world's largest medical center," the Texas Medical Center but I don't even know where to begin because of the different organizations and whatnot. I have only been able to trace the tilt table test provided by Baylor.

Here's a link to some of the well known medical centers in the US, but missing Vanderbilt if anyone's curious:

http://en.wikipedia.org/wiki/Medical_centers_in_the_United_States

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Hey Okie, I live 3 hours away from the Houston Medical Center, and I've tried various doctors over the years and haven't found one that really knows anything about POTS or how to work with it. That's why I made the trip to Mayo Jacksonville. It is amazing that in the medical center with all of the various hospitals and medical groups that there isn't anyone to help! I've tried cardiology(a few different doctors) and neurology(again, a few different doctors). No luck whatsoever. IF you ever run into a helpful doctor there, please message me and let me know please!

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Hi sue, so was Mayo in Jacksonville helpful or not? I have appointment with them, but now think maybe I have to go to a different location.

Thanks.

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I personally did not get any benefit while there. It is a great facility, and I'm sure it is a wonderful place for most disorders, but I didn't feel they are in any way "specialists" for POTS. If I had to travel again, I'd choose either Nashville or one of the other recommended places.

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Okie I'm so glad to hear you will have access to health insurance soon. Trying to obtain proper health care without it would be so expensive. I'm fortunate in that I live close enough (California ) to drive to Arizona Mayo. Well my husband does the driving. Lol. It's about a 6-7 hour drive which seems like forever at the time. Flying would be much faster but more complicated in some ways.

It does take a bit of research to find out what local medical resources and testing is available to you. I was unable to find anything in California which seems so ridiculous with all the University hospitals and such. My Cardiologist here is the one who writes prescriptions for Mayo Neuro recommended medications and the one who keeps up with what is going on with me.

I hope you find someone who can help you.

Janet

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Thanks Janet! I used to live in California and should've went to the Arizona Mayo, darn it! It is surprising California doesn't have the specialists, it's amazing really. UCLA and USC are supposedly well known for their medical specialties. Speaking of California, have you found relief in San Diego, CA? A fellow POTSie of mine said she found relief in SD due to the barometric pressure there and consistent weather. Weird.

I'll be doing heavy research into the TMC area in Houston, TX and let people know if there's any help here. Thousands from the US and worldwide come here so I don't see why they wouldn't have any dysautonomia/POTS specialists. It's a heavy medical tourism market. I guess it helps that being a new graduate nurse, I should be able to find some connections in the city once I pass my exam and work.

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Hi Okie,

Yeah, It's pretty crazy that there isn't much help here in California. From my big crash in 2005 to my Mayo visit in 2011 I am almost embarrassed to admit to the number of doctors I was referred back and forth to. No one quite knew what to do with me. I went to UCLA, USC and Ceders. I was referred to UCI but I decided it wasn't worth my while going there.

No I can't say that I noticed any difference in my condition while in San Diego. My son attends UCSD so we visit there on occasion. Mostly he likes to come home and visit though. Lol.

I should think you would find a dysautonomia specialist somewhere in Houston.

Congratulations on conquering nursing school. That's a major accomplishment. I'm sure you'll ace your boards. Nursing is such a wonderful profession. I loved nursing. Best of wishes to you.

Janet

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I just returned from a trip to Rochester Mayo. I had an outstanding experience and would recommend them. Every person probably has a different outcome, but I finally received a specific diagnosis and prognosis for my condition. I was skeptical that they were re-performing many tests that I had already gone through at least once, but now I understand why they require you to take the full spectrum of tests onsite. The facilities and process were pleasant and I can think of only one appointment where I had a frustrating wait time (out of 17 appointments). Good luck with your decision - I think a visit to Mayo or Vandy will be beneficial.

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I just returned from a trip to Rochester Mayo. I had an outstanding experience and would recommend them. Every person probably has a different outcome, but I finally received a specific diagnosis and prognosis for my condition. I was skeptical that they were re-performing many tests that I had already gone through at least once, but now I understand why they require you to take the full spectrum of tests onsite. The facilities and process were pleasant and I can think of only one appointment where I had a frustrating wait time (out of 17 appointments). Good luck with your decision - I think a visit to Mayo or Vandy will be beneficial.

Okay, so what is your DX?

Mayo is a well oiled/run machine of a place. Pretty amazing. Most have had good experiences here in AZ as well.

Issie

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Okay, so what is your DX?

Mayo is a well oiled/run machine of a place. Pretty amazing. Most have had good experiences here in AZ as well.

Issie

My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests. I had to wean off midodrine, florinef and a beta blocker the prior week and surprisingly did ok without them. In fact I lasted the full 55 minutes on the tilt table test without any issues. In my previous three tilt tests I never made it past 10 minutes and was in utter misery from start to finish. I was convinced I had some sort of neurological problem, but the tests ruled out any such disorders as well as nerve damage. I think the SSRI I started six weeks ago has really helped. They couldn't explain all of my symptoms, but I am hopefully optimistic that they have the proper diagnosis. In summary, they think I will gradually continue to improve and be able to lead a relatively normal life if I know my limitations (no more guys nights out drinking).

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Hi Chris. So you not taking any of those drugs now, just the ssri. May I ask which one? I was told zoloft helps a lot of patients.

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Hi Chris. So you not taking any of those drugs now, just the ssri. May I ask which one? I was told zoloft helps a lot of patients.

Correct, I dropped Midodrine and Florinef and am now only taking Paxil (40mg).

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I do feel like sometimes some of the meds that i take make me feel much worse. Also, many of the drugs that i have been on gave such horible side effects, that i developed realy bad anxiety. I am so scared of taking anything and feel like i should drop all of them.

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