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Turned Away From Mayo


tiger
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I sent my records a few weeks ago to Dr. Low for review and found out last Friday he will not see me. All they said was that there is nothing else he can do. The only test I have had for pots is the TTT, which the cardiologist interpreted as negative since I didn't have any drop in BP, but my HR went up to 160-180 so to me and my doctor it was a positive test. I know that I look bad on paper, I was treated for lyme with no success so he probably saw that and didn't want anything to do with me. I am not expecting a miracle, just had some questions that my doctor can't answer since he has never treated a pots patient before. I also wanted to know if some of the new symptoms I am having are related to the pots or if it is something else. How can they do this to me?? I feel doomed now and I feel like nobody can help me now.

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sara,

i am very sorry that dr low doesn't want to see you. i do know how you feel as my neuro lately told me that he couldn't do anything for me anymore (i was diagnosed with pots about 4 years ago) and he doesn't want to keep me as his patient. so, like you, i don't have a doctor feeling responsible and have to fight my own war.

i think we can stand strong and keep on fighting as we have this forum to support us!!!

take your time to recuperate from this and than keep your chin up!!!

corina

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I've been rejected by Mayo, Vandy and NIH, so don't feel like the lone ranger....

At this point, I'm glad I never did go, as I wouldn't have felt it was money well spent. It was more for validation than anything else and I don't need that anymore.

It's different for everyone, but I remember being pretty upset at the time too. It's very frustrating to have these things happen, and very unvalidating. Just remember, you are sick and it was not a personal reflection on you.....

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i'm actually pretty surprised he wont see you with heart rates like that....and considering that you have ONLY had a tilt table test?? that is wierd........i have rates like yours and he was all about seeing me. ...i dont have lyme. not sure how or why that would have anything to do with him not wanting to see you.....? perhaps since he believes your pots is all chalked up to lyme, so further evaluation or investigation he might see as a waste of time (meaning he doesnt see the potential for other causes of the pots coming into play) - at least you have some sort of answer (lyme) as to what might be causing your pots. no one has a clue with me.

so sorry you're going through this. dont give up, there are docs out there that WILL see you.....so sorry you're going through this.....

take care....

p.s. by the way, i was seen by low and with my experience, i wasnt that impressed with him anyway. i mean they ordered a bunch of tests and all, which was good, but i saw him for about 5 seconds the whole time i was there, so if you're looking for a doc who you can talk to about the pots, my first recommendation wouldnt be low. that was just my experience....

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I forgot to include that I have pretty much had a full neuro workup MRIs, spinal tap, EMG, EEG, and cardiac echo, all normal.

Cardiactec- the lyme treatment failed, it did not help me at all, in fact it made it worse. Also my HR doesn't go up that high anymore since taking lexapro, it helps me alot especially with brain fog and blood pooling.

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If you can come down here to Alabama, I'd try to get in to see Dr. Moore at the MVP/Dysautonmia center in B'ham. It takes a while to get it, true- but unlike Mayo, etc., they don't seem to regard treating you as a grand privilege bestowed upon our sick little selves, who can't POSSIBLY understand the big words being used around us. (Yeah, so I have some dr. issues. Who here doesn't? ;) Clearly, they're not miracle workers- there's no cure. But she really helped me with lifestyle suggestions along with the meds. And I think their testing is better too. I had a second 'spot' echo there, and they found that I do have mild MVP along with my dysautonomia, and gave me hydration suggestions so that it doesn't happen anymore. I can tell a big difference.

Oh, and she told me that Lexapro is a great drug for us. Controls a lot of the symptoms. So you're on treatment anyways!

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sorry to hear about mayo, i had the same response earlier this year. all i heard from family and friends was" who gets rejected from mayo?" I needed the help and what validation i felt was shot. My cardiologist who referred me, said he wouldn't even return her call which is a professional courtesy. she wasn't impressed. I have an ep appt dec 8 and i can only hope i;m having a spell so he can get the full experience. Keep searching!

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When I went to the Mayo, they said, yup, you have POTS, stay on the Florinef and go home.

No follow up with my doctor, even when he tried to contact them.

A year later I begged to be seen in the autonomic clinic where Dr. Low worked, saw a different neuro who said, yup, you have POTS. Nothing more we can do.

This is such a frustrating thing to deal with.

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Sorry to hear you were turned away from Mayo. I was misdiagnosed twice at Mayo over the last 15 years, and finally had a TTT done in March to diagnose POTS. My MD did not know what to do with me, so she sent my records and a letter to mayo, and I was also turned away.

I was able to see another physician in MN who specializes in POTS reseach abroad. His comment to me about being turned away from Mayo is "I don't know who gets in to see Dr. Low, since all my patients have been turned away" NICE!!! Mayo is not the answer. They are good a diagnosis, but not at treatment. If they don't have a protocol, and a study for your condition, you are out of luck.

My BP did not drop, and my HR increased like yours, and I was told I have POTS by the physician at the U of M.

Good Luck finding another MD.

Rhonda

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Guest tearose

Just a suggestion since I had excellent care at Mayo...two times and 11 years apart...

Apply again!

Just remember, if you want them to diagnose you, trust that they will set you up with the right doctors!

Instead of requesting a primary Mayo doctor, let them choose one.

Have your pcp from home pick your most challenging health issue and let Mayo do what they do.

Maybe you will start out with a cardiologist and then as all other symptoms are discovered, they will be examined and other specialists will be consulted and you will be seen by anyone who can remotely help you!

good wishes, tearose

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I have seen Dr. Lowe as a POTS patient. His staff have told me more than once that he is seeing fewer and fewer patients. Instead I assume that he is focusing more on research. Therefore, the notice from Dr. Lowe does not mean that you don't deserve assistance or that you cannot be helped. It just means that HE cannot help you. There is a big difference.

Also, I have referred my neurological patients to Mayo and had a referral declined in the past. I was told that Mayo's patient load was so heavy that they would only take patients who they thought that another neurologist could not handle.

I would not want to be seen by any doctor who does not want to see me. A doctor-patient relationship is very important and both partners (both the doctor and patient) should be fully vested, not grudgingly going through the motions. I would recommend finding someone who wants to see you. You deserve a good relationship with your doctor.

Karyn

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If it is any comfort, I have been to Dr. Low twice. He works more as a consultant than a regular physician. A resident does your history and exam. You go through all the testing. He sits down with you and says yes, you have POTS. Follow up with your regular physician. We are all looking for a miracle but he doesn't have any miracles to offer us. He is kind and knowledgable about explaining POTS. But you really aren't missing anything. The first time when I was diagnosed he recommended lower leg exercises to prevent pooling. That did help me.

Dawn

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