Where To Get Retested -- Conflicting Messages From Mayo

[lynnie22]

I hope this is within the appropriate boundaries of this forum. I am not asking about particular doctors. I just have been having alot of recent issues that are new and scary and baffle the doctors, so I'm thinking of returning to where I first got tested, Mayo in Minnesota. However, when I call there, I get different feedback from whoever is scheduling and am confused. I have been told that they no longer send you to multiple disciplines, just the one you make an appointment with, and I was originally seen by a cardiologist who I must return to. That is fine, but they will not let me see a neurologist as well, unless ordered by the cardiologist. My symptoms, besides of course the POTS, seem very neurological in nature, so it seems only appropriate for me to be checked out by a neuro there, if I'm going to travel from NYC to hopefully be evaluated. I was told by one department that you cannot be seen in the neuro center if you're over 50, and by the neuro center that you can't make an appointment there at all, if you are new to that department. Anyway, it is confusing and I am just wondering how you all get evaluated, and if you have any suggestions on other places or how to work with the Mayo system. There is limited choice here, and it seems that my newest symptoms are not being addressed.

[bellgirl]

I've been told by people on this forum that if you have Dysautonomia that you should go to Mayo in Arizona where they are more equipped for Autonomic Nervous System Disorders, so you may want to try there instead. I wish you well, and will pray for results being that you are having new symptoms.

[Guest Hanice]

Care to share your new symptoms?

[lynnie22]

I didn't know Mayo in Arizona was more equipped. Thanks, Kim. As far as my new symptoms, sure I'll elaborate. When I first went to Mayo almost three years ago, I was exhausted, out of breath, various aches and pains, and a very fast pulse when walking. I didn't know it was on standing then. Over the past year, I have lost 30 pounds and my appetite for no reason, have had more and more frequent episodes of trembling, numbness in various parts of my body for weeks, mainly the back of my head, my heart rate has climbed although I'm on a beta blocker which I've become extremely sensitive to and can no longer take much of. My blood pressure written about in a separate post has become completely out of control, going very high usually for a week every month only after 3 pm (171/115), settling down later in the evening after more beta blocker. Recently in the last two weeks, it has begun to dip to all time lows at night -- I think a reaction to the bb, but so strange because it never did that before. My eyes have been bothering me for the last year or so, lately to the point where I can't wear my glasses much or look at lights. I have been less and less able to do any exercise, I get out of breath, many more periods of being dizzy, feeling faint. I get rushes of anxiety that is overwhelming and with it feel a trembling, but I don't think it's emotional. So those are my latest. I also developed terrible pain in my stomach, gastritis, maybe not related, and tore both shoulder rotator cuffs, I'm sure not related, but just to add to my frustration. Thank you for listening. Any ideas?

[angelloz]

I went to the Mayo in Minn. a few weeks ago to see an immunologist. He referred me on to neurology so I go back in October. While I was there they did some autonomic testing. I am 54 years old. Don't know if that helps or not. I constantly struggle with weight loss and my blood pressure.

Pm me with any questions about my visit if you want to.

[bellgirl]

I was having vision issues, as well, and finally went to a neuro-opthamologist, who couldn't see past my cornea to visualize my retina. My chronic dry eye had gotten so bad that my cloudy corneas were causing me to have horrible vision and sensitivity to light. Going to a corneal specialist who prescribed erythromycin ointment and preservative free tears every hour, my vision has improved immensely!! Sorry you are feeling so badly. Anyone with yo yoing B/P is going to feel horrible. Are you on any medication other than a Beta Blocker? Some anti- anxiety meds would also help with your anxiety which could be very much physiological, and stomach issues and gastritis can be linked to dysautonomia, as well. You need some good doctor's. I hope you find some help quick wherever you go!

[lynnie22]

Thanks for the offer Angel. I may do that. Thanks Kim. Yes I also take ativan, but at night to sleep. Maybe I need to take it earlier when the HBP comes on. I took one earlier after a little more inderol when my bp shot up to 171/116. It did help eventually. It's scary. My internist told me to go to the ER if it happens again. He said it's very dangerous. I cannot function this way. Not sure if it's dysautonomia or not, but all of it could be -- or something else. Friends are trying to help me find good doctors to see and I will have that MRI as a beginning to seeing what is going on with my adrenals.