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It's Official


mtkim
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I havn't posted in a while and just thought I would give everyone an update. I had my first appointment with Dr. Alsheklee at University Hospital Cleveland on 10/06/2006. I walked out of his office feeling like a load had been taken off my shoulders. What a wonderful doctor! I had a tilt table today, sweat test, and a couple others (my regular cardiologist had scheduled and cancelled 4 tilt table tests on me and by the 5th I was so mad I cancelled it myself :() My regular cardiologist didn't even really wants to consider POTS because of my age (45) and told me that it was a "young person's syndrome." Dr. Alsheklee gave me the confidence to come off of my medications for a few days so that I could have the tests performed, whereas I never got that confidence from my cardiologist.

I have to say that Dr. Alsheklee was right in the room with me through all the testing today while a wonderful research assistant (Kevin) performed the tests. I loved it because they allowed my husband to be right there (husband was first to figure out the POTS thing I might add :blink: ). I went from 90 beats a minute when I was laying down and as soon as they tilted me I went to a sustained 130s-140s and even touched 150 a couple of times. I didn't pass out, but let me tell you the dizziness and nausea hit my like a brick. :)

Well, I have been officially diagnosed with POTS and it is so nice to know that I'm not crazy, I'm not crazy, I'm not crazy (can't say it enough) :lol: . I'm still waiting for some blood work to come back from the Mayo Clinic.

I know it's a long hard road, but it is such a relief to actually have the official diagnosis. I am going to actually celebrate because I now have a diagnosis and I am going to treat myself to a shower seat !!!!!! I would't get one before (even though I am extremely tachycardic and symptomatic when I take a shower), after all why would a "crazy person" need a shower seat!. NOW I'M GOING TO TREAT MYSELF TO ONE.

I just have to say that I have been so impressed with University Hospital. They have the friendliest staff, doctors, and even the young woman taking money in the parking garage today had a smile that could light up a room.

I will keep you all posted. Thanks for letting me talk. If my husband hadn't found this site I don't know what would have happened to me. Again, thanks to all.

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I am so happy to hear about a doctor that I am not familiar with, being so nice and VALIDATING for somebody. I am also impressed the doctor was there WITH YOU for all the testing.

Thanks for sharing and I hope they are able to figure out some help for you.

Sophia

:(

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Congrats! There is nothing like the feeling of knowing you're not crazy, and that there's a reason that you feel crappy. I remember when I got my diagnosis, my family made my favorite meal. The emotional relief is amazing.

Kady

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It's amazingly validating to have a name for what's happening to you, as well as understanding about the mechanics of what's going wrong with your body. I'm sorry that you have VEDS, but now that you know, you have power. EDNF has emergency info on their main site, and you can make sure to have a some sort of medical information on you at all times, such as a medical bracelet that identifies you with Vascular EDS.

The EDNF vascular emergency info page can be found here:

http://www.ednf.org/medical/content/view/67/33/

you might want to keep a link to the above page or a similar thing with you--in your wallet, or on your file kept with MedicAlert if you have an account with them, or engraved on a medical emblem or bracelet. Personally, I have an account with MedicAlert because I liked that first responders can get my important info from anywhere in the world even if I'm unconscious and don't have my wallet on me--via my membership number engraved on my bracelet. They have a newer item--a usb drive key that can be accessed by medical personnel--which I've considered purchasing, but decided against for now b/c it's not as likely to be on my person if I were unconscious. For someone like you, a usb drive could hold the entire set of emergency files. You could have your own drive--they are pretty cheap now, and keep some sort of note on you/with you indicating that's where to look for important info.

I'm sure there are other services out there, MedicAlert just happens to be the one I'm most familiar with. I have no affiliation with them and am not advocating their service, only that you have SOME type of info medical staff can get QUICKLY if you have a VEDS crisis.

Nina

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congratulations that you have finally found an answer but i am sorry that you even had to look for some to begin with--- meaning i am sorry that you got sick in the first place. bitter sweet kinda. hope you get some good treatment and that you have more good days than bad.

dionna B)

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