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Just A Hello...super Newbie Here


Jlynne
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Well I have been reading this forum for about

2 months I have been diagnoised with Pots

Secondary to eds and many other dysautonaumias as I read I kinda am cringing because I can relate to almost everything and it makes me afraid of how far I have to go. I have undergone over 25,000 in testing and feel exhausted and all I know is what's wrong not even what to do yet or actually where to start

I have been misdiagnosis

Poisoned with contraindicated medications

Lied to and totally misunderstood I cannot talk to my friends and family about how sick I am they just get scared and sometimes even mad my doctor says he will do everything he can to make me comfortable.

I figure this will be a place where I can talk about this and the seriousness of this without frightening anymore. I look forward to meeting everyone

And hearing about everyone's experience.

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Hi Jl, welcome...I found this forum only a month ago and I cant tell you how much it has helped me understand myself and help me feel sane. I was so confused when I got diagnosed the second time with POTS. I ve dealt with this illness my whole life and have learned more in the last month than I have in 31 years, mostly from the kind and supportive people that have been, and are going through it with me. Hang in there and just ask lots of questions till you start to find your ground. Talk to you soon and take care =)

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I am also a Newbie and reaching out almost desperately for understanding and what to expect, I am at the place where I find it hard to "live in the moment" because every morning I open my eyes and am afraid of what symptoms I will experience , or what new curveball will be thrown at me. The medical profession moves to slowly. its very hard to get reassurance when nobody knows what your talking about.....I have a hard time explaining the disease myself. I hope you find comfort here also,,,

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This forum offers hope, it takes away fear, it empowers where often the medical community or friends/family don't fully understand. Finding this group that has suggestions, is well educated and supportive truly helps with recovery and acceptance. And when you find a poster or 2 or 10 who has symptoms just like yours you can trade ideas or just silently feel relieved that you're not going crazy. Good luck!!

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Welcome JLynne and Traceyf. I've been reading and following this forum for some time and just began posting recently. It is such a great feeling knowing that there are others out there that know exactly how you feel is such a comfort. I hope you gain some knowledge, support and encouragement through this forum. I find it relieving sometimes to just be able to commiserate with others, not necessarily to be a downer, but to just know that there are others just like you out there. I do (thankfully) have the support of my immediate family (hubs and kids), but quite frankly, no one knows what you are feeling except those that feel it with you. Here's to hoping you get some answers, encouragement and the ability to commiserate. Wishing you all the best.

Bebe

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