I was dx'd with dysautonomia July '07 at Cleveland Clinic. I don't seem to fit into any particular catagory, but Shy-Drager seems to be the best fit to my symptoms. I have been treated by local dr's for labile hypertension for the past 20+ years with liitle or no success. After spending a week of testing at Cleveland, being dx'd and starting researching dysautonomia, all the pieces started to come together. Some of my symptoms include the inability to control my blood pressure, postural hypertension, POTS, sleep apnea, fatigue and memory trouble. Going outside in hot weather drops my blood pressure to dangerously low levels and cold send it skyrocketing. My body'd thermostat doesn't work well at all. I just recently can across this site (NDRF) and am hoping that maybe someone could shed a little light on my dx from their own knowledge and/or experience. Any information would be greatly appreciated. My e-mail address is rollins32@suddenlink.net

hi Rod,
Welcome to one of the best sites on the internet! This site has been a godsend to me. Everyone here is great....best of all, you realize you are not alone or strange in your suffering. Dys. takes on many different symptoms, and they vary from time to time. It is a very frustrating, life altering condition, but you will recieve much compassion and understanding with this group. Don't forget to check out chats on Mondays and sometimes Wednesdays. they help suzq

Rod,

Shy-Drager or now called MSA is the worst primary form of Dysautonomia. It is very difficult to diagnosis and many of us worry about having or getting this form. Just because your symptoms seem like you fall into this category, it may not be so.

What kind of testing have you had done? Did they do a brain MRI? Did they do autonomic reflex studies?

Please send me a PM if you would like to talk.

Rod, it certainly seems you have all the symptoms. While it is good to know what you have, it doesn't make it go away unfortuately. I wanted you to know you are in my prayers... anytime you need to chat let me know. la745773@mindspring.com hang in there.... Lynn

hy. i'm new on this forum and new in understanding MSA. My mother was diagnosed with MSA-C, with cerebellar symptoms mainly, she has simptoms for 4 years but only now doctors realised what maybe. We are from romania, a small country in the east europe so medicine is not very well developed. I was wondering if you can tell me how did your disease progressed and what type of medicine do you use to improve your simptoms. Keep faith...

I am thinking about you to day and praying for you.