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Parkinson's Disease and POTS -part 1.


katsusu
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HI again,

i thought it was time I told everybody about myself. Michelle knows myPOTS story because when there was no forum and when POTSPLACE was not such a big site-about 3 years ago . Wonderful Michelle my life saver and answered my letter that was was fullof questions i was trying to understand. She has been a source of strenght for me and alwayshasanswered my pledfor help- so thank you Michelle.

My POTS is somewhat different from ,right now, anybody else because i should not have it. I should be orthostatic hypotensive because my primary illness is Parkinson's Disease. Which I have had 13 year now- I am 43 yrs old. People with PD-often (usually)) start losing thier sympathatic nervese to the heart and start becoming hypotensive, (according to Dr. Goldstein from NIH). They found this out by takin PET scans of the heart and seeing PDpeople with less sympathic nerves- with POTS people they have normal sympathic nerves of the heart andother organs- which makes sense because the sympathic nerves is where you find adeniline (NA) receptors.

Let me back up for a minute- i found out after 2 painful years of goiong to doctors for nauseuea and lightheadness that i had PPOTS> It is when i was getting a brain surgery (3 of them) for PD. I was getting a deep brain stimulators put in. During that time i almost fainted and did faint later so they started taking orthostatic vitals 2 times per day- they saw the POTS pattern and figured it out.

Later -i stated reading Dr. Goldsteins work on ortostatic hypotension and PDs- iwrote askinghim where i could find info on PD and POTS- he said he never saw anybody with the 2-did i want to be evelauated.

Of course i went for it- found out indeed i wwas following in PD foot steps and had lost some sympathic nerves to my heart but i also showed in the table tilt test that i was POTS, too.

How was it possible to have 2 opposite illnesses? actually there is no answers yet but===============

I will write part 2 tonight- have to get ready for doctors appt. now.

Kathleen

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Thru alot of my reading, I'm not very suprised that you have both dx's. I have found many similar findings in articles in both Europe and Australia on several "ralated" illnesses. Mostly including cronic fatigue syn/fibro, lupus, mvp. but I'm not very suprised because Parkinson's is in the same "group" of illnesses. In an unrelated case, I heard of a woman being dx'd with both lupus and MS. Because there is so little info on how these illnesses develope and their causes, I find it easy to believe that there are so many overlaping dx's.

I would like to read more on your situation and hope to "talk" often.

One quick question, if you don't mind, where are you from?

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