Back From Mayo

[lynnie22]

I'm not sure how to write about my trip without going against the rules here, but I will try.

I had a main doctor, a cardiologist who I saw three years ago who orchestrated my consults, which included a neurologist. Unfortunately, the neurologist saw me very briefly, did not do additional tests and my major advise from this trip was to exercise. I liked my cardiologist very much then and now, but the answers I had before I went are the same ones I left with. There were new areas of focus, non POTS related, like osteoporosis and arthritis, need for cancer screenings, etc.

But I didn't get real answers, although there is always hope that when the doctor sends me a follow up letter, it will contain more.

I was hoping to learn what type of POTS I have, and what I can do to better control my symptoms, especially the low blood pressure in AM, labile BP in PM, tachycardia upon standing all the time, anxiety and exhaustion. There was no real answer for the low BP in AM except what I currently do which hasn't worked very well (salt). A good anti anxiety medication (to be found) was recommended for anxiety, although one of the few tests done was a lying down and walking stress hormone comparison test which showed a huge disparity in the stress hormones, a great increase upon standing. The main suggestion offered was exercise for all the problems. I am hoping that building up my leg strength will make the huge improvements they said.

I was surprised that more was not done, after my long trip and difficult problems.

It seems that it is all up to me.

Any suggestions/thoughts?

[KareBear]

I wanted to tell you that you aren't alone! I went to Mayo, Rochester MN, all the way from south Texas!! I already had a POTS diagnosis but was hoping for not only confirmation of my diagnosis but also treatment options as we had exhausted all meds for POTS and I was no better. I was there a week with non stop testing 4 days straight. I was told by the specialist I did have POTS and "SEVERE adrenergic dysfunction" (that was exact words and in report).

After everything the specialist told me that I had already tried all the standard POTS meds with my local doc so he didn't have anything more to offer.

So I understand how you feel. I didn't have a very good experience either.

[looneymom]

Hi Lynnie,

Your experience sounds similar to my son's. Your best bet may be to see a functional doctor or naturopath doctor. Someone who is willing to look at the whole picture. My husband and I have been pretty close to doing that with our son. However, in Oklahoma a naturopath doctor is not recognized by our state and it can not be billed through our insurance.

Leg strengthening exercises can be very helpful. Before my son went to MAYO he was doing physical therapy. My son had a great deal of strength in his legs according to the physical therapist at MAYO but he could not walk or stand. Since this visit in December of 2011, my son has only had a 3 month period that he could stand and walk. My son was in physical therapy constantly, so I'm pretty sure that being deconditioned is not the reason why Tyler cannot stand or walk right now. After he had the flu this year, he returned to physical therapy the end of January and kept going until the tremors made this feat impossible.. So if you have already been doing exercises and walking, you may need to look a something immune or metabolic related. I am truly surprised that MAYO did not look for an underlying cause. I am glad that you share your experience with the forum.

Rachel

[Katybug]

Hi Lynnie,

I'm sorry that you haven't returned with clear answers. I don't want to sound condescending by asking this, but, did you clearly state to the doctors (each doctor) what your goals of the visit were? I ask this because I used to go into my doctor's appts assuming/letting my doctors run the agenda and I never got any answers. I truly believe I did this because this is how we are taught to revere doctors in our culture and therefore let them be in charge almost without an awareness of it. Then, I made a change and started running the agenda the way I did when I was a manager running a meeting. It became much more productive for me when I let the doctors know what my goals were for the visit. And I am not vague, I am very direct and succinct about my goals and questions. Even if you didn't do this while you were there, maybe you can follow up with a phone call or email to clarify what you need answered. I hope the follow up reports give you additional information but if they don't, it doesn't mean you can't ask more questions.

[lynnie22]

I want to add that my experience wasn't bad, just inconclusive and limited -- and not with the answers I hoped to get. I really like the main doctor, as said, who tried to look at me as a whole person, and thus my osteoporosis and thyroid issues came under scrutiny along with possible areas that he felt, upon reading of my notes and examining me, warranted further studies. If anyone ordered tests, he did. The problem was with the POTS workup. There wasn't much of one at all And believe me Katy, my goals and concerns were on a sheet, enumerated over and over again to each consult. I am pretty forthright. I asked the neurologist if he were going to do further tests to address my concerns. He did not. I was surprised at this and voiced this. In general, the consults came in after their fellow or other doctor under them interviewed me. The consults did not stay long. That was the tricky part. My questions, my concerns remain mainly unanswered. I got to voice them to the first one, tried to voice them to the consults. There is a belief that if I can get my blood pressure up in the AM, it may go down in the PM. Of course, getting it higher in the AM may be the challenge, and the effect of anxiety on its rise later is a factor, but then there are the adrenal surges I know I am getting. I feel comfortable addressing my unanswered questions to the main doctor once I hear from him, and hope to get some answers. I asked him already the best way to reach him, which isn't easy.

I AM in poor condition, unable to exercise regularly and believe that they are right in this being a PART of my worsening condition. So Rachel I am not in good shape, and the main doctor is going to send me, he said, an exercise program, which I eagerly await. But I agree with you about a metabolic factor. Naturopathy isn't covered here either.

I believe they could have tried to look deeper into my problems, tried to find the cause, the type...I don't know. I will follow what they said, but there are parts of the plan which continue what I do now which isn't working. So I will follow up with questions which I hope will be answered.

Sorry for your experience, MedicGirl. I hope you've been able to find some help since.

I hope we all find help, and can share it as we get it.

[Angel1234]

Hi Lynnie! I know you said naturopath isn't covered in your state, it's not covered by my insurance in FL either, but have to say if all else fails you may want to consider looking into it. Of course everyone's condition is different but I got diagnosed in August with dysautonomia, granted my condition is on the milder side, but I see improvement already. I think alot of it has to do with the nutritional deficients we discovered. I got this testing done at a wellness center. I have been taking vitamin supplements for those and adrenal supports herbs. The latter is because I also had hormone testing done that showed extreme adrenal fatigue. Anyways just wanted to share. ☺

[lynnie22]

That sounds helpful, Angel. We all need adrenal support I think because most of us have out of whack sympathetic nervous systems and stress hormones. The biggest problem for me with that, EXPENSE. I do believe it is very valid though.

Rachel, I don't know if you'll get back to this, but I just wanted to say I hope the more holistic approach is helping your son. I know it is a shocker that Mayo really seems limited, at least in my case. You would think they would do a vitamin level tests. When I asked the neuro consult why he wasn't doing more tests, he said that he was only a consult. Do keep us informed about him.