Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 hi. I am glad I read ur letter. I was initially diag. with SDS. however it was changed to POTS and parkinsonism. I am 42 and I jsut set blood to NIH because they are doing research of some protein with the cells(?) on patients diag with POTS. SEE NDRF.org or neurocardiogenic syncope. I spoke to a nurse named Rita Mincemore at NIH. What doctor are u seeing at NIH? nancy Txbriteyes@... wrote: > > Harriet, > > I have some news you will interesting. I had some autonomic tests > at the > National Institute of Health in Bethesda land. The doctor I was > seen by > is a very knowledgeable about the autonomic system. He told me in the > > beginning of the testing that he would be able to tell what I dont > have, and > maybe a little of what I do. Well, to make a long story short. > > I dont have Shy-drager syndrome, but one thing he knows for sure I > have is > POTS. Postural Orthostatic tachyacardia Syndrome. He asked me if > anyone told > me I had Parkinson's, I told him no. I guess he is curious to findout > if I > have that. Also he is testing me for another condition that on of the > symptoms is POTS. I did read where POTS can turn into SHY-DRAGER, but > I hope > it doesn't. But I did tell the doctor about you and Anne. He said it > is > very rare for anyone to live with SHY-Drager for 11 years. He also > said they > sound like they have had a stroke. Thats when I told him about Bills > wife. > Wouldn't it be great if you did not have shy-drager but something > similar > like I do. He said the reason I was dx'ed with shy-drager was because > POTs > was not DX'ed until 2 years ago. It is inherited. and that could be > what is > happening to my son . I sure hope not. > > This condition mimics shy-drager, it has the same symptoms pretty much > except > the slurred speech, more tacycardia and the autonomic system is more > affected. I am still hanging int here, I can walk or stand that much > because > of the fast heart rate and dizziness. They wont get back my blood > test for 2 > weeks, and I guess they might want to perform some more test. They > said they > would call in a few weeks with some type of treatment plan until I get > > scheduled for the rest of the tests. I hope you feel better. > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 HI , I am seeing Dr. Goldstein. He is a wonderful doctor. I am 43. I was dx'ed with shy-drager 11years ago.. The dx'ed was changed 1 week ago to Pots and possibly Parkinsons. Are you going to be included in the studies.. I will know next week if they want to do more testing. I get my blood work back next week. Where do you live? I live in Fairfax Va , so I am not far from the NIH. What are your symptoms? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 i don't know what pots is. i'm in potomac dx p+ i had petscan....sympathetic nerve endings in heart " missing " . i have oh, but no one will say shy/dr. but i have serious temp control problem, and big bp ups/downs. i'm only on sinemet because every drug i try makes me " weak " (nearly pass out). nancy spires Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 i don't know what pots is. i'm in potomac dx p+ i had petscan....sympathetic nerve endings in heart " missing " . i have oh, but no one will say shy/dr. but i have serious temp control problem, and big bp ups/downs. i'm only on sinemet because every drug i try makes me " weak " (nearly pass out). nancy spires Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2001 Report Share Posted July 28, 2001 HI , POTs is Postural Othostastic Tachycardia syndrome. Postural Orthostatic Tachycardia Syndrome, Patient's Report Quote Link to comment Share on other sites More sharing options...
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