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Is Dysautonomia Dx An Easy Way For Docs To Say They Have No Clue But Something's Off


Angela
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don't mean less complex..........but the variations of dysautonomia's seem to have such common variables............it's almost like, was I dx'd with this just cuz they have no other explanation right now? I read other forums (not just PXH rising, just a coincidence of what I usually check out other than dinet or one or two others on occasion)

check these conversations out:

http://forums.phoenixrising.me/index.php?threads/pots-vs-nmh-in-people-with-me-cfs.11277/

http://forums.phoenixrising.me/index.php?threads/new-cfs-and-inflammation-paper.17509/

http://forums.phoenixrising.me/index.php?threads/new-forum-addressing-mast-cell-activation.20278/

http://forums.phoenixrising.me/index.php?threads/suggestions-for-avoiding-external-triggers.20518/#post-312955

I couldn't locate the thread that i was acutally looking for where this guy (I think a guy Nanug or something like that was discussing symptoms of mast cell), that was when I started this post but I just think how crazy it is that how many forums I have checked out from MS to CFS to ME to Gilberts to RS to AS to EDS to mcad to even more..............our symptoms are so much the same! and how many of us have, over the years earned more and more dx "medals" on our belts.

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I like to read Phoenix Rising too ----but, I don't participate in that forum. Have read some good threads there though.

I think that is why they are calling our problems a syndrome ---it is so complex and complicated and has so many facets to the picture. It seems we do get a whole lot of labels and we lump them all together into what makes our puzzle complete. A piece here and a piece there and different things making the definition come together.

I'm not sure we will find just "one" thing to blame it all on. But, at least if we can get pieces of our puzzle and work on things methodically ---we might get at least some relief from some of the issues.

Issie

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I also think it's hard because so many of our symptoms are so general and so common. It's that we have SO MANY symptoms that seems to set us apart from a lot "typical"/traditional type patients. And, I think it's hard because the way our healthcare system has developed where you see a different doctor to deal with every system in one body. When you have something like we have, where it effects EVERY system, nobody seems to know how to address the issues.

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exactly. why are we catogorized as a "disorder" and not a "disease"? who comes up with this ****? i mean, i dont take a beta blocker because I don't tolerate them well, but I take more antihistamines then the label on the bottle says to take(only double what they say, ok:)) and although I feel better because of that, I don't feel that I am cured whatsover....if I was "cured" I wouldn't be on anything I would think! my neuro symptoms have diminished alot on h1's and h2's 2x per day....for how long and is it a coincidence or helpful IDK, but I still have clinal pots (I am a junkie of testing my hr and bp every day, just don't feel so crappy as long as I don't have to stand long and when my hands and feet aren't cold and tingling all the time and the tinnitus and vision issues aren't bad) regardless, what are all these quick fixes we do take for "now" symptom relief going to do to me/us in the long run. INCLUDING BB's!!!

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Yeah, I'm thinking it's not going to do me much good if I die of liver failure from all the meds I'm having to take now just to keep me upright and somewhat "functional".

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