Has anyone been to MAYO Clinic or Cleveland Clinic for the Dyasautonomia Research Clinic?

[rhonda1017]

I have an appointment with Cleveland Clinic on July 21st and an appointment at the MAYO Clinic in October.  They are supposed to have complete lab and clinic that deals only with Autonomic Dysfunction.  Does anyone know how good they are?  I am very unstable and very concerned about my health.  My blood pressure is still very high even though I am taking medication.  Whenever I am up and moving it reaches 198/168 frequently, I'm always short of breath, and my heart(chest) hurts all the time now.  I am getting weaker and weaker every day.  I tested positive for HyperAdrenergic POTS and my cardiologist is trying to help, but I am his only patient with this disease.  I also have many other symptoms and my family doctor thinks that my adrenal glands are the big culprit.  But, how do you know when your symptoms are serious and can I have a heart attack brought on by the POTS.  My echo, stress test, and EKG came back fine back in March, but things are worsening and my blood pressure has been this high for the past 4 months whenever I move.  Do I need to be concerned or is it just the POTS?  I wonder if it is weakening my heart.  Thanks for any help or insight.  

[rhonda1017]

Hi,

     They haven't checked my adrenal functions since March when I was first diagnosed.  They haven't checked my aldostrone levels or my kidney fuction, but I do go to the bathroom alot.  When they did the adrenal test, I filled two Gallon jugs in just 24 hrs.  It's been since about May that my symptoms started changing.  I believe that at first it was just the POTS, but now my husband and I believe there is more going on, so does my family doctor.  That's why they are sending me to Cleveland Clinic on July 21st.  They will be checking all of that there.  If Cleveland isn't able to help, my doctor told me to keep the appointment at MAYO as they have been doing the Dysautonomia Research and Clinic for a much longer time and have more success rates.  I will let you know what happens and I'm hoping for the best.  You can go online and register or call to set up appointments at Cleveland Clinic and the MAYO Clinic.  MAYO has three clinics in the U.S.  You do not need a referral to get in to either of these clinics.  I have also heard of people the drive there and tell them their symptoms and sometimes they get in right away.  So, you might want to consider checking them out online and trying to set up an appointment.  I hope this will help you, as I know how frustrating this can be and disabilitating.  It is life altering.  I'll be praying for you.

[stacey555]

Sorry I just read your other posts and you already answered my queations.  However are your adrenal horemones showing up high now?  Did they check your aldostrone levels or your kidney function?

[stacey555]

If they can help you there I want to go after you.  I do not have high blood pressure though, I just cant ever breathe or go outside.  They do think it is my adrenals though.  How did your doctor determine that and did you gain alot of weight or lose?