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Anyone Else Have Just Plain Old Pots And Nothing Else?


abbyw

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Hi,

I've been reading a lot of posts from people who have all sorts of other issues. It silly, but its making me nervous that I have some other underlying issue that I don't know about yet, just waiting to creep up on me.. here comes the hypochondriac.

Thank G-d, I seem to have POTS without any other conditions, other than IBS for the last few years which has gotten better as soon as my POTS started (although if you think about each part of your body hard enough, you could always come up with something.)

Are there any others out there like me or should I be digging deeper to find some root cause - like something auto-immune?

Thanks,

Abby

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I'm content with my plain old POTS diagnosis. I've never seen an autonomic specialist specifically. My primary doctor and my cardiologist have been helping with symptom control. I don't feel I need to dig deeper at this point. If my symptoms get worse I would be more inclined to want more details I guess. I have had enough pin cushion time and am content with just POTS!!

Brye

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Some just want to know the reason for the POTS DX. There probably is a reason for all of us. Some are just content with just the label. Others want the nitty gritty and to dissect it and try to get to the core of the matter. Since, there's so much that can go along with this syndrome - there may be multiple reasons --not just one. It just depends on if you're okay with having the label and don't need to know the reason. Some are okay with that. I personally am not --but, I enjoy research and understanding the way the different things in the body works. It's intriguing to me and I enjoy it. We are so wonderfully made - science is interesting to me. There's so much we can learn by studying the body and it's functions. But, the more you learn - the more you realize there is so much more to learn - the more you realize you know so little, in the first place.

So don't worry about it, if you're content with what you know. Those of us not content - will keep digging and maybe some day we'll figure out a cure - or at least find a pretty purple band-aid for us all.

Issie

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Thanks everyone.

Issie, I guess that's my question. I am a "learner" by nature, and I am grappling with - "do I just have POTS or is there something else here?" I don't seem to have the symptoms that others (MCAS, etc.) have, so where in the world did this come from? Is there any reason to dig and try to find out more? Is POTS the question or the answer?

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Just POTS for me. Most people here seem to have other coconditions, but guess I am one of the lucky ones I''m content with just treating my condition and not worrying about a cause. I have improved over the years. Mine was post viral.

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I agree with Issie; I'm always trying to find the reason for everything. Medical Research is in my nature (retired RN); plus after being undiagnosed for 13 years, I want desperately to feel better!! -_- I was very healthy and active before this, and I want to feel my best. Mine was also caused by a virus, but I have high blood pressure, MVP and sleep apnea, too, even though mine is considered Pure Autonomic Failure. It's great if you are doing OK on your meds and are comfortable with what you know; everyone's different. That's what makes life interesting...we all are created individually with a purpose!! :D

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I just have POTS. I agree there are a lot of people that seem to have a lot more complicated health problems and have been sick for ages. Its good to know there are others with a simple case, if POTS can be considered simple.

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Thanks everyone.

Issie, I guess that's my question. I am a "learner" by nature, and I am grappling with - "do I just have POTS or is there something else here?" I don't seem to have the symptoms that others (MCAS, etc.) have, so where in the world did this come from? Is there any reason to dig and try to find out more? Is POTS the question or the answer?

I think, that only you can answer that question for yourself. None of us know whether or not you can feel settled in your mind with just the DX. If you can - GREAT! If you can't, start digging. We will have some good discussions as you start to uncover things.

Issie

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POTS is my only diagnosis, but I have other stuff getting uncovered as well, but not "disease" in nature (just things not right in my body). I wasn't satisfied with getting a "label" and treating symptoms as a bandaid solution. I'm not sure that I'll ever get it figured out entirely, but i do believe that the digging has helped me make all the progress I have.

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I can understnd how you feel. Its important to do tons of research, I did, and also to get thoroughly tested for any co-conditions (EDS, etc) that you have symptoms for to rule them out. Managing your other issues can help POTS a lot. If you don't have another condition to start off with, you probably won't get it, since most of them seem to be genetic, or at least triggers. And most people get better with time, even those with other stuff. It does seem like practically everyone else on the forum has other stuff going on. But I don't and at least a few others don't, so know you aren't alone.

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