What is going on at the presynaptic side of the junction is almost a complete mystery for most doctors.
I don't know which tests are pre and post synaptic side of the junction (no matter how hard I try to learn this stuff!) but is the test that I inquired about with the link in Germany one that is measuring the presynaptic side and therefore part of the mystery for doctors in the US? Or have I actually had that test and I don't know it?
Your tachycardia and high blood pressure were intended targets of the drug, and you responded.
I've never had high BP and the BB was initially for a diagnosis of IST ("inappropriate sinus tachycardia") which was later changed to a diagnosis of POTS. I took the BB for all of 2013 and during that year I worked full-time and even traveled on a belated honeymoon and had no trouble walking/breathing- just the tachycardia episodes. It was purely to try to control the tachycardia/POTS and for whatever reason, the pulmonary restriction/phrenic nerve and diaphragm neuropathy came in 2016. I do not know why and wish I did!!!
Your bp is better controlled, but you still use a wheelchair.
Yes you are correct and my BP has been higher since the IVIG but it has not changed my ability to walk without wheelchair (not that I expected it would from one infusion.) Otherwise it was staying on the low side even with Midodrine and when the Midodrine helped me breathe a little (even with BP in the 80's/50's) my doctors said it was due to "preferential perfusion" and getting more blood to my lungs.
But now with the antibody/neuropathy, am not even sure if this is accurate. But even in the instances where my BP stayed over 100/60, it never changed my ability to inhale a full breath (the lung/muscle restriction) and again I do not know why. At the end of 2014 I tried a period of going off of the BB completely (for a medical test) and then stayed off of it for about eight days but this also did not change my ability to breath (and sadly without it, the tachy was quickly back into the 160-170 range and unbearable) so I went back on it.
I've known other people who had trouble standing after being put on beta blockers, but none of these had tilt-table tests.
My second TTT (in 2016) showed no drop in BP, but it did capture "significant POTS." I was only off of the BB for one dose, so some was still in my system, which should have lowered my BP but it didn't. The TTT in 2014 though, you are correct, my BP did drop very low- around 68/48.
But since 2013 having tried different BB's, being on no BB, and briefly trying a CCB, none of these have changed my ability to inhale a full breath or to breathe while standing. It is maddening not to know why and the thing that has made the most improvement (even though short lived) was the one infusion of IVIG. Am hoping this info helps someone else down the line.
I also wanted to tell you but keep forgetting, that many of the people in my calcium channel group (a few with LEMS but almost all with just the antibody without LEMS) are a much closer match to my symptoms (re: breathing, using wheelchair, POTS, etc) than to most people that I speak with on PR. I am not sure what this means diagnostically (b/c it is such a small sample of people).
I just thought it was interesting b/c it is people worldwide with the calcium Ab, but with a vast variety of diagnoses and treatments, yet they are more similar to my situation. None of us have solved though why we have the antibody or what to do about it besides get the cancer screenings (which is what most doctors focus on when they see that antibody.)
Thank you again for your feedback on this. I tried the leg lift exercise again last night (have been practicing!
) and I can now lift each leg separately but still cannot lift them both together no matter how hard I try. I absolutely intend to ask my Neuro about this test but do not see her for quite a while.