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jangle

Going To The Mayo Clinic Soon Need Advice

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So I'm having an appointment at the Mayo Clinic In Rochester coming up. My biggest fear is going there just to have diagnostic testing done without much treatment recommendations. I've already gotten diagnosed with POTS at Baylor's autonomic center, so testing isn't going to be very helpful (they're just repeating the same tests over).

Since I'm beginning medical school soon, I really need a treatment regiment to help my presyncope and there are literally no doctors where I live who're willing to treat POTS.

What I'd like to do when I get to Mayo is bring out the list of medications:

-Octeotride

-EPO

-Mestinon

-Fludrocortisone

-Saline

-Possibly methylphenidate

-Ivabradine

The bolded medications are the ones I really want to try. But I guess I'm asking for advice on how to go about ensuring that I'm going to be given an opportunity for these treatments. Does anyone know who has been to Mayo before?

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I've never been, but just wanted to wish you good luck because I know you waited a long time for this appointment. Hope they can help and good luck in medical school!

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I saw Dr. Fealy when I was first diagnosed there and really liked him. I just got home from Mayo's Scottsdale campus and have always had good experiences (this was my 4th trip). They don't provide me with regular follow-up care but are always good about letting me call with concerns or seeing me during a flare. In my experience, the doctors there are willing to help you try a medicine regimen to get your body back on track. I would just take your list and have an honest conversation about it. One of the most amazing parts about going to Mayo is how the doctors are so willing to really listen and take their time with you! Good luck with your trip and keep us updated!

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Hope you get more answers and the treatments that you desire, Jangle. Let us know how it goes. For sure have with you the testing results you already have and a list of what has been tried and your response to it. Any concerns that you want tested for. Let the testing take place first. They probably will re-do all of it. Then when you have your last follow-up visit - after testing, would be the time to bring up the meds. First, they want to know what your symptoms are and the discovery path you've been on. So, if you follow their order of things - then it will probably go very well for you. I use the Mayo in AZ too. So, not sure about the one in MN. But, the one here is amazing in how they do things. Hoping for a wonderful experience for you!

Issie

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I've been seen at both Rochester and AZ. I was originally diagnosed in Rochester way back in the 90s. I don't know who is there now to see. I really liked the doctors I saw when I was there at the time and I love how they handle things. I think bringing a list of what you want to try and what you'd like to do is very helpful since they will see you for just a snapshot of time.

When I went I met first with cardiology and they did a big work up, I had labs, autonomic testing, EEG, more bloodwork. Then I met with the cardiologist again and went over everything. At the time the cardiac stuff was my main issue. Now, in AZ I have a cardiologist, neuro, GI and I've seen Allergy and Rheum.

If other things come up on your labs or symptoms warrant seeing other specialists they are fantastic about trying to get you in with someone while you are there. They do a great job and I've never met a staff person who wasn't friendly/helpful. What's great about Mayo Rochester is that everything is connected by underground tunnels. You never have to go outside if you don't want to. Including the hotel I stayed at and the hospitals. It is a huge complex and there are wheelchairs everywhere if you need to use one.

Good luck and I wish you well.

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Hi Jangle,

I went to MAYO in Rochester almost three years ago and that is where I first got diagnosed. I think alot depends upon who you see, but I agree that they are very available to talk to you and refer you to other departments as needed. Definitely bring your list of questions and medication concerns and treatment options. When I went I had no idea what was wrong with me, had some real thyroid hormone issues and thought that was the problem so I booked an appointment with an endo. Thank God I also booked with a cardiologist who knew about POTS and ended up setting me up for all the tests. The endo did not. They did end up giving me treatment recommendations, and the cardiologist was available for several months afterwards for follow up questions by email and phone. I think it is probably best though to see someone from neurology set up. I am thinking of going back at some point because of continued issues, not just around POTS, but also because of that.

Good luck. Because they seem to make themselves available after your trip, you might be able to make out a continued treatment plan.

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I live nearby and work in research at the clinic, and my primary care is at Mayo Rochester. My neurologist is Dr. Fealey. He has always been really good to me. He's always running late, but it's worth the wait because he never makes you feel rushed during his appointments. He is the one who suggested the Mestinon for me, so that drug is being prescribed for POTS at Mayo. Not so sure about some of the other drugs. My neuro seems pretty open to different treatments, so hopefully whoever you see will be the same way. Do you know who you're scheduled to see? There's a handful of neuros at the Rochester campus who specialize in autonomic dysfunction.

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Never been to Mayo just wanted to wish you luck Jangle, and hopefully you will get the answers you're looking for!

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J,

I've never been to Mayo, MN but know they do have some autonomic testing capabilities that not all autonomic testing facilities have (ie: Thermoregulatory sweat test, Hemodynamic lab, etc.). I don't know anything about Baylor but I'd suggest looking into which tests you have not had done that they might have at Mayo and make sure you get those scheduled during your stay- if you think they might provide further insight into your case. Also, if you suspect changes or just want confirmation of your previous testing that second work up might not be a bad thing. (ie- for me having a second QSART was helpful because I suspected the first one was a fluke result.)

I've been to both CC and Vandy. I've had two full autonomic workups. I've personally met with and had consultation with 6 different doctors at these two centers that specialize in autonomic dysfunction. I've also had a full MCAS workup and consulted with 2 top Hematologists in the country (in two different locations) re: my MCAS. For me, getting these "second diagnostic workups" have been really helpful- so I would encourage you to identify what would be most helpful for you in the "repeat" of those tests so

that you don't just have the sense that your time has been wasted but that the diagnostics are purposeful.

Also, if I were going there (this is just me- but since you are going into med school this might be of interest to you too) I'd like them to give me their assessment for where I am on their Autonomic Dysfunction Assessment Scale as well as details about how and what they measure. (You probably know earlier this year they published the "Compass 32" Assessment tool for use by other physicians. On site, however, I believe they use a more detailed assessment tool that has more like 70-100 variables. I'd be interested in looking into that especially if you are thinking of specializing in Dysautonomia in your future work.

I know you know this but it bears emphasizing due to your question- any of the big medical centers (Mayo, CC, Vanderbilt, etc.) are excellent in the area of diagnostics and research. But, they are not as strong in the treatment side simply because they usually don't follow patients for long periods of time.

As for your treatment questions- I'd put them in writing and fax to each doc you will see in advance of

your appointment. That way they will have a heads up that you want to focus your time in meeting with them on your treatment questions. That said, and with all due respect of the big med center docs, I'd look for another autonomic dysfunction doc who treats patients in the field and follows them on a long term basis to get a second opinion on treatment plans they recommend. I've found this to be particularly helpful in selecting the better class of drug in my case by taking recommendations from (experts in diagnostics and research) to Dr. Thompson who is an expert in treating Dysautonomia pts day in and day out and following them on a long term basis. For instance, at Vandy, Provigil was recommended for my fatigue but after discussing this recommendation with Dr. Thompson, I learned some pretty helpful insights that changed my mind about what drug I should really be on. He said that Provigil seems to help in about 20% of his patients but that he sees more improvement in patients who try a stimulant drug such as Adderall or Methylphedate. These stimulants help not only with the fatigue but more importantly they are strong vasoconstrictors and improve circulation in addition to fatigue. This discussion was so helpful. I'm on Adderall. I would not be on it today w/o the recommendation of Vandy to try Provigil and the guidance of Dr. Thompson to try Adderall first. This has been the most helpful pharmaceutical treatment I have tried to date, by far.

Above all else, I'd suggest you enjoy this experience in the halls of greatness at Mayo. What a blessing that you get to go and experience world class health care in the presence of some of the finest doctors in the world.

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I'm with Naomi...ask about the heart autoantibodies.

Personally I've been to the Mayo Jax. I saw three doctors, with only one being helpful. The other two acted like I was wasting their time.

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Hi Jangle,

In October of 2011 I went to Mayo, Arizona seeking answers and any possible treatment recommendations to improve my level of function. It was by far one of the best decisions I have ever made. My primary objective was to see Dr. Goodman but what typically happens is a referral first to Consultative medicine and then referrals to other physicans as deemed necessary. Prior to my appointments I was mailed the first of what would be many revised itineraries. Based on those I began writting out specific questions I had for each of the different specialists to which I had been referred. My main concern was of course POTS, which I had already been diagnosed with and the possibility of autonomic neuropathy. Like you I look for any new research out there on the subject and am so grateful to everyone on this forum who provides new information and links. In any event having your questions somewhat formulated and a potential medication list prepared as you have done is especially helpful. I always felt like I was given a sufficient amout of time in each appointment to address any questions or concerns.

In the end I had an individualized plan for conservative and nonconservative treatment of my POTS as well as recommendations for other health issues. Mestinon is one of the medications I am on by the way. Additionally, I have been amazed and so thankful for the long distance telephone support that has been provided. I should think that your experience at Mayo, Rochester would be similar.

Best of wishes to you,

Janet

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It took me four months to get an appointment with Dr. Goodman as a new patient. I think one can get in sooner during the warmer less desirable months.

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Also, I noticed a post regarding Mayo possibly no longer accepting Medicare so I called them to clarify as this would have affected me and others of you I am sure. I was told that with the exception of Mayo Clinic Family Medicine - Arrowhead, they still accept Medicare.

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