I am feeling completely defeated right now, like I have nothing left to fight mentally. My emotional self is just shutting down into one huge confusing rollercoaster. There are always ups and downs but now there is different paths that showed up. After being treated for POTS for 7 months with all of the top treatments including 1 liter IV saline a DAY, medications, and using the Levine program to condition my heart, I did not get better like I should. Yes, my heart rate does not go as crazy anymore and my shortness of breathe is a little better but I have a buttload of symptoms that didn't react to the treatment at all.
After seeing this new neurologist on Tuesday I might have some other answers. Not the kind of answers anyone wants but you have to do what you have to do. He said that I don't have POTS because if I did my BP wouldn't be constantly low and have such severe drops. POTS BP issues aren't quite like that.
I also have a fixed and dilated left pupil, nausea, vomiting, involuntary movements, don't sweat anymore, brain fog, body pain, and dry mouth and eyes. There is more but I refuse to type it :)
The diagnosis I received(if the tests come back positive) is autoimmune autonomic ganglionapathy. Say that 5 times fast, really I would be impressed if you could say it once. Anyways, it's an immune disorder where my body is attacking itself. It is the reason for my eye issues (it is beginning to attack my brain fibers) and the reason for my tachycardia by attacking my heart and as it spreads and more and more of the antibody builds up the worse things get and then more organs become affected.
The treatment for this is immune suppressants, plasma exchange (looks kind of like dialysis), other meds and absolutely worse case scenario would be chemotherapy. This illness has NOT been confirmed yet. I have tests to do that could show something totally different so I am not set on this, we just don't know right now. (story of my life)
This is my current, scary, situation. To quote my doctor "The story of acute onset tachycardia and orthostatic hypotension (low BP) associated with seizure following respiratory illness, and recent 20 pound weight loss as the result of an intense physical conditioning program is suggestive of a primary autonomic disorder. I can not make a diagnosis of POTS in the setting of OH (low BP). The pupillary delay is highly suggestive of autoimmune autonomic ganglionopathy.
IF AAG is found by antibody testing, consider cellcept and prednisone, Plex vs IVIG.
My 12 year old daughter has the same thing going on. Initially diagnosed with POTS, but now the doctor (I think it's your doctor too) is ready to diagnose AAG ante weaver waiting on the blood test. My girl has nOH (neurogenic orthostatic hypotension) with tachycardia along with a host of other symptoms too. It's the nOH that really brought her out go the POT diagnosis.
ReplyDeleteGood luck and we will be praying for you.
My doctor said with POTS there is no change in blood pressure which leads to a suspicion of a primary autonomic disorder which is what he is testing for. I can't imagine being 12 and having to go through all this. She will be in my prayers and keep me posted!
ReplyDelete