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Silly Question???

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I know, no silly questions, right??? :) Most of you think "Yeah, right" and I should know this but I'm not quite sure. It is mainly a question I get from friends, strangers, etc.

So I have P.O.T.S. and got that mostly figured out. That was diagnosed in Nov. 2011. In Dec. went to Mayo and was diagnosed with at least 7-8 MORE things... I am always grateful that I started having mild symptoms in April 2011- didn't get severe until Sept.- and had ALL (well, as far as I know-diagnosis' )back in Mid- Dec. My autonomic testing came back very, very bad. I know we all hear it said "Mine was the worst they've ever seen" so I won't go there but my autonomic system- including organs just wasn't working at all. DX- Autoimmune Mediated Autonomic Dysfunction Neuropathy. So I asked- do I still have P.O.T.S now? Neurologist said I still do - but now more of a symptom than a primary diagnosis. They also discovered this rare autoimmune disease that there isn't even a name for.

So I can have both at the same time? Which is the better one to focus on? Is one better than the other? Is one likely to go away than the other? I'm always asked and if I mention both I get these questions. I don't notice the difference as I feel exactly the same now as I did when I only had P.O.T.S. they are both horrible and still disabling.

To be honest- I struggle much more with my Post Concussion Syndrome- so much loss of cognitive function, memory loss, my family swears I'm a different person. The headaches that I can't even describe. That's from 10-12 concussions. I have no certainty of my future but research so far isn't great. When I say struggle, I mean it makes me more emotional, causes more problems family problems, and is so discouraging. I will read this 3 times and I'm sure there will be errors- part of my identity was obnoxious I know- but a grammar snob. It just feels sometimes like it will never end. It's always something else.. But that is a non productive and ridiculous attitude to have- so out it does!!!

Thanks everyone- maybe I will the concussions for the question. :) Happy Full Moon Night! ANY insight would be so appreciated!


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It seems to me that you have POTS but the underlying cause of the POTS is the Autoimmune Mediated Autonomic Dysfunction Neuropathy. For a lot of us POTS is a symptom of something else being wrong rather than the final diagnosis.

I think this is what your doc was trying to say. For you, the something else that is wrong is your AMADN. From all your posts in the past, it seems to me that the AMADN is what they need to try to find a treatment for so that your POTS will hopefully improve. And, it seems like your AMADN is causing a lot of other problems for you in addition to the symptoms associated with POTS.

So yes, in short, you could have both the AMADN and POTS but for the docs they're going to be more concerned with the AMADN diagnosis because that's like the "root" of the problem, while POTS is one of the "flowers" growing from the "root".

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