I'm currently suspected of having MG due to mestinon restoring my ability to breathe. It's a night and day difference to how I was doing right before I was hospitalized in terms of function. I can speak again, mostly swallow, and lie on my back during the peak of the dose. Unfortunately, my blood tests are negative so am in diagnostic limbo until I can get a neurologist who can do a sfemg.
I'm currently receiving PT at home and feel like my mestinon has gotten less effective in the weeks since I've been discharged. My legs have also started to shake which wasn't a symptom of mine on discharge. My PT thinks it's deconditioning bc I'm basically stuck in bed all day with the exception of the handful of times I drag myself to the bathroom. Doing that pretty much causes my heart rate to spike to 120 bpm. If i spend longer up (or lying flat on my back when mestinon wears off), I start sweating profusely.
My PT would like me to get out of bed every hour of the day. I frankly haven't tried to push myself to do that bc if I'm lucky I'm half dozing and if I'm unlucky I'm counting down the minutes until my next mestinon dose. Also I snore when upright if too tired and that kinda terrifies me.
I currently receive 4 mestinon doses each day. I asked my neurologist to increase the frequency before she referred me elsewhere and she refused. I use one dose right before I go to sleep for the night, one dose in the middle of the night when I wake up. And one dose in the morning.
My question is:
What is your experience with deconditioning? How much does it worsen your symptoms?
At this point, I'm pretty certain that my symptoms are getting worse but I'm unsure what can be done. I only got hospitalized after going to the ER 4 times in a span of a few days. Second ER told me I had anxiety, third ER suggested FND despite measuring 20 NIP... I don't think I have it in me to go back unless I start drooling again.
Oh and the cherry ontop is I have seronegative RA and I was taken off RA meds without coordinating with my rheumatologist. So my RA is currently having a field day with my rib cartilage.