Need Advise On Mayo Clinic.

[Gemma]

Can someone suggest which Mayo clinic location is better at diagnosing POTS. And also where you can be seem by other specialist while there for other conditions.

Thank you.

[lynnie22]

Hi,

I've only been to the Mayo in Minnesota. Different people have had different opinions about the best one, although this is a primary center for pots. That is where I was diagnosed three years ago. But one note. They have quite a waiting list and, if you are over 50, which I don't know but probably not, you cannot be seen it seems at the regular pots center. I'm not sure what they do when you don't have an actual diagnosis yet. But yes, when you make your initial appointment, I think you can make other appointments with other specialists for that visit, or the doctor you see may send you to other specialists. I went recently and things had changed. I had to return to the same doctor I had seen last time, a cardiologist who was good, but sent to who he felt I should see as consultations which were limited. I don't think that will be your case if you've never been there before.

Hope that helps.

[Gemma]

Thank you!

[looneymom]

I have heard the Clinic in Arizona has a good one for Adults. There are some old post on this forum about their visit. See if you can do a search.

[Gemma]

Ok, thank you. I will try to search on here. I had appointment at Mayo in florida, but cancled that one because heard that they do not concetrate on POTS as much as other locations do.

[amyksmith]

Hi Gemma -

I went to the Mayo Clinic in Rochester, MN and had a full work-up for autonomic dysfunction in neurology as well as seeing doctors in gastroenterology and a neurologist who specialized in migraines. If your initial request/ inquiry for an appointment specifies which areas of specialists you need/ would like to see, they will arrange an itinerary of appointments and tests with multiple specialists -- at least that was my experience.

[JuneFlower]

amy in ny- that sounds worthwhile. was it? did they have better treatment?

June

[gjensen]

I have a referral to the one in Florida. Is there reason to think that would not be ideal? I understand that they had two subspecialists there, but only have one now.

[corina]

Hi everyone, I'm chiming in as to explain what can and cannot be said when it comes to doctors and hospitals here at our forums. Unfortunately we had to come up with the following rule on this subject:

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

The decision to create a rule for this was not made lightly. DINET has had problems arise in the past due to negative info about doctors being posted on our forum. If we were to ever be sued for defamation of character, then DINET would likely have to shut down. We don't have the financial resources or volunteers who are healthy enough to deal with a law suit.

I hope this makes you better understand why we need to be quite strict on this. It's def not that we want to be, but unfortunately very much needed!

[Gemma]

Hi corina. I hope we are not writing anything against regulations here. I just posted this question because wanted an advise which Mayo clinic specializes more in disautonomia. Is that against regulations to ask?

With my latest bad experience to a clinic that I can not mention on here, I wanted an advise from people about Mayo, to make sure that I can schedule appointment at the right location. I have heard that all mayo clinics are good, but some specialize more in certain conditions and I just wanted to know which Mayo location specializes more in dysautonomia. Hope asking this is not breaking any dinet rules. Thank you.

[Gemma]

Gjensen when is your appointment in florida? I had appointment there but canceled because decided to go to another clinic. I want to schedule Mayo appointment again soon. If your appointment is coming up soon, can you please let me know how it went. Florida is like 20 hours drive from my house, but much closer then other locations and my husband can drive me there, but to other locations I have to fly and I am really scared of flying since I got sick. I wanted to know if they specialize in dysautonomia conditions. I was not able to get that information over the phone and was told that i will see a physician first and then he/she will decide who else I need to see.

[corina]

Don't worry Gemma, you're not breaking any rules by asking this! After reading gjensen's question I was a bit worried that people might forget about them!

[amyksmith]

I can't speak to whether any of the Mayo Clinic locations is more fully equipped to evaluate Dysautonomia than any other, as I only ever went to the Rochester, MN location. I was there 5 years ago and I believe at the time that the Mayo Clinic website specified the MN location as where what they call the "Autonomic Neurology Subspecialty Group" was located, or so I assume because that's how my primary care doctor at the time and I chose the location. I just checked the website now and there is no particular location given.

If I were wondering whether the location to which I'd been referred has an arm of that autonomic neurology subspecialty group, I would simply call and ask. They won't lie to you.

Similarly, I believe that every location will consider all your conditions/ symptoms/ illnesses if you tell them when you're making your appointment what's going on with your body. In my experience, the Mayo folks wanted to know everything and wanted to send me from Neurology to Gastro to Endocrinology to.....all the departments they determined needed to see and test me so that they could make the best possible diagnosis of my health problems. It's great and it's also exhausting.

Really just call them up and ask them if they have the autonomic neuro group and/or if, for example, you have a lot of GI issues, you can be seen by GI at the same visit as neurology (assuming you're making an out-of-area visit and it will be multi-day which is the only experience I have).

Edited for grammar and also to add that I was in my mid-30's and undiagnosed when I went. I did not wait very long for an appointment -- about 2 months from initial contact which was made by my primary care physician (though that is not necessary). If anyone wants to ask me more specific questions about my experience, you can send me a message.

[Gemma]

Hi, amy in ny. May I ask, were they able to give you a diagnosis? I feel like mine has something to do with either MCAS or hormonal, or autoimmune, but local docs are not able to figure out. I wish i could be seen by other specialists, not just neurologist. Did you schedule appointments with other specialist in advance or they scheduled them when you were there?

Thank you for all the info.

[gjensen]

Gemma, mine is May 5th.

My new cardiologist referred me there, but I chose where to be referred. Mayo in Jacksonville is less than a days drive for me. 7 hrs?

From what I understand is that there used to be two subspecialist there, but now there is only one. This is what they told me.

The reason that I asked the question, is if there is reason to think I will not get a complete work up, then I would be skeptical that I made the right decision. That is why I wanted to know. I do not want to spend all of this money and not get a good work up. I want some things to be more clear.

I am not too concerned about particular doctors, but actual results. If I can get a complete work up, the results will speak for themselves.

My cardiologist referred me under the label dysautonomia and POTS. After reviewing my records, they took me. I hope that I made the right decision.

Has anyone went to Florida and got a complete work up?

Gemma, I will be glad to share my experience when it has been done.

[amyksmith]

Hi Gemma -

They were unable to determine a precise underlying cause other than "auto-immune disease", but that's not for lack of testing/ trying/ looking.

My primary care physician and I supplied them with all the medical records they asked for prior to me getting an appointment. She spoke directly with a coordinating neurologist, not me. But I know she told them about all my undiagnosed symptoms and illnesses in all organ systems.

When I went there, my appointment was a time to "check-in" at the Neurology Desk. What followed was a consultation with two neurologists who also gave me an itinerary for five days of testing and appointments in various departments. I stayed in a hotel near the clinic and had nearly a full day's schedule for each day. It was all arranged prior to my involvement in person. It was like being on some kind of vacation tour where every moment is scheduled for you except for meals and sleep. I was kept quite busy and got exhausted. But, it's the Mayo Clinic so they know that might happen and they have people who can assist you in getting to your next appointment or test with wheelchairs or whatever you need. It's a full-service kind of place.

If you want more detail about my experiences at Mayo, I'm happy to answer any questions, just PM me.

[Gemma]

Thank you Amy for the info. Its an interesting experience. I just recently went to major clinic as well. I had lots of testing done for dysautonomia, but didnt geta chance to see other specialist besides neurologist. Plus the doctor that I saw there said that I might not have anything wrong with my autonomous system. So, i am so confused. My neurologist locally and local cardiologist says that I do have POTS. I was hoping to see other specialists there, but was not refered. So, now I am thinking about scheduling an appointment with Mayo clinic and this time I hope to make a right desision with choosing the clinic.

Gjensen, i do not know how severe your condition is but just wanted to let you know that 7 hours drive is really not bad at all. I had to travel 15 hours to this clinic that I just visited. We spend a lot of money on this trip. We had to stop for overnight sleep at hotel on a way there and back, plus 3 nights in hotel there. A lot of expenses. I am glad I got all the tests done, but still have no answers. I don't know what exactly going on with me, which type I have and don't know the underlying cause. But I am glad that based on the tests they were able to tell me that I definetly do not have pure autonomic failure.

I am thinking of going to Mayo because hope that maybe there they could find out the cause and suggest a treatment plan.

Honestly if I were you and had Mayo only 7 hours away, i would go there. For me its different. The one in florida is like probably 17 hours drive. And the other I have to fly because its really far.