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hi I'm new to this forum


theresa
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Has anyone been to the mayo clinic to see the neuro's that take care of dysautonomia problems? I need to go and was wandering what other pt's experience there has been. I would be traveling out of state and have little faith in the medical field are they as good as they put off to be?

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Hi, theresa,

Welcome!

I am sorry I haven't been to Mayo....just wanted to say, "Hi! and welcome aboard!"

Someone here will have answers for you. Good luck!

Peace & light,

Lulu :lol:

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Good Luck at Mayo. I have been twice to diagnose my mysterious illness. I was very impressed with Mayo's abilty to run test and have results back in a short time. Mayo did not diagnose my POTS, probably because they never ordered a tilt table test.

My disapointment with mayo was the lack of treatment advice they had. They actually sent me the psychology department because they tought my racing heart was anxiety related. I went throught the general medicine area, and had referals to Cardio, Endro, and Rhumatology. I think if you have a referal to a particular MD, your results will be better than mine.

If I were to go back with my new POTS diagnosis, I would make sure that I saw the specalist in dysautonomia, and come away with a treatment plan. This is sometimes not easy if you don't fit nicely into a diagnosis.

Best of luck to you at Mayo. They do have some wonderful MD's and diagnostic tools.

Rhonda

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Mayo can be a helpful place. You will have a better chance of getting better care if you are able to get your primary appt with one of the specialists in the autonomic field (Dr. Low, Dr. Fealy, Dr. Benarroch, Dr. Sandroni). When you make your request for an appt just state that you need to be seen by autonomic neurology specialist. I don't know what type of wait time they currently have but it would be worth waiting for the right Dr.

In terms of what to expect from them they are good at diagnostic and ruling other disorders out. Do not expect a miracle cure but go with the aim of finding something that will make daily living easier and more managable. Also, do not expect any follow up care once you leave the Mayo Clinic; you need to have local Dr.'s that are willing to follow through with Mayo's recommendations and who will research and learn on their own as well.

Good luck! Keep us posted

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when i called mayo clinic they told me there is a 90 day waiting list and would have me see a general doctor who would advd. me what dept. or depts to see. they said if my neuro-surgern would call for me i could poss. get in quicker. but if i don't get an appt. in 90 days then my doctor would have to call again and put me back on the 90 day wait list. i think cus i called they would not make appt with a doctor that treats dysautonomia problems, maybe my doc can rq that for me. i'll call him monday.

i'm afraid to tell them i think a hosp in ohio caused my problems, some doctors wont go against another ones but i had a neuro in chicago tell me that the surgery i had years ago caused my spine to collapse and the cutting and removing some gangla caused surgery induced autonomic failure. that hosp has lost my records and will only give limited info to my doctors as to what they did. that same hosp dx me with pots but when the subject of my surgery came up i was advd that was not the problem and even noted on my chart under pt's history "no surgery". Some doctors don't want involved in a lawsuit but i had a neuro-surgen out of state document it and a lawyer told me the statue of limitations ran out years ago and would not take my case. right now i could care less just want an honest doctor help me get better or at least deal with the problem. the doctor in Chicago did the decompression surgery, my new neuro in ohio wants me to go to the mayo clinic says this is a very complex and interesting case. At first all i had was just a cluster of "symptoms" untill now i have a lesion on my brain, spleen and small granuloma's in lungs, posstive ana, abnormal emg, eeg. and no answers.

thanks for all the posts

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Don't bring up the surgery issue with Mayo while trying to obtain your appt.

They do not like to be involved in court cases and do not like their Dr's being called as expert witnesses. If they think up front there is this potential you may have more trouble getting seen.

Keep the info until you get to the specialists that need to evaluate you.

I had my Dr. write Mayo clinic stating that they felt I had an autonomic disorder but they didn't have the equipment to thoroughly test me and thus, were requesting a referral to an autonomic specialist who could complete these test for me. I think I did wait 2-3 month but they assigned me to the right dept to begin with.

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Hi,

I was pretty sure I had POTS when I went to Mayo. My neurologist wasn't entirely convinced because my biggest complaint was shortness of breath. I asked him for a letter from him requesting that they consider autonomic dysfunction, though, and I think that helped.

I called complaining of shortness of breath and they made an appointment fairly rapidly with a pulmonologist. I asked for the autonomic docs, but they said with shortness of breath, they would start with a pulmonologist.

The pulmonologist suspected POTS (before he even read the letter -- my hat is off to him!). They said the autonomic docs were booked up for 8 months, but the next day, I had an appointment with the autonomic lab for a TTT. I failed, and saw the autonomic doc two days later!

He was very nice and caring. I felt very optimistic with my diagnosis in hand and medications. However, there really is no follow up, so when I didn't do well on the beta-blocker, I didn't have any "Plan B"!

Mayo is very impressive. Everyone was very nice and I efficient! There are some very smart docs there, too. I really needed a firm diagnosis that my professional disabiliity company would accept. And Mayo is considered the authority by most people (right or wrong). So that helped, too.

All in all, I would recommend them. I bet you have a good experience.

Keep us posted!

And welcome to the forum! I hope we can all be of help to you!

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Welcome Theresa! :)

I too had an excellent visit at Mayo -- best hospital I've ever been to. All of the staff was very friendly and helpful and I never felt rushed. Everyone listen to what I had to say, treated my problems with great respect, and never suggested that "it's all in your head" or put me off.

Dr. Low read all of my paperwork and explained what tests he wanted and why. After all of the testing, we had a LONG appointment in which he explained all test results, presented his diagnoses, and detailed the very individualized treatment plan he was suggesting. He gave my parents and me the opportunity to ask all the questions we wanted, answering very explicitly and honestly. We were very impressed by his thoroughness and never felt rushed in the least.

In terms of a treatment plan, I agree with Poohbear -- don't expect a miracle cure. Luckily for me, Dr. Low's treatment plan has my POTS under control to the point that if that was my only condition, I could be living a very normal life right now. That is not the case for everyone. I went in fully aware that he might not be able to treat my condition -- he is a doctor after all, not a magician. I have found that it's best to look at treatment the way you do a jigsaw puzzle. Try to work on getting as many pieces together as possible, preferably the biggest ones. Maybe the doctors at Mayo will be able to find ways to help alleviate at least some of your symptoms -- any improvement brings you closer to better health.

The one thing that Mayo tends to be not so good at is follow-up after you get home. Because it is primarily a research/diagnostic hospital, it can take them a while to get back to your letters -- I have, however, always received letters back from Dr.Low responding to all my questions. Just be aware that it can take a while.

Hope your trip is very worthwhile and provides you with some information about what's going on with your body. Keep us posted! :)

Angela

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