Any thoughts?
http://www.ncbi.nlm.nih.gov/ pubmed/11474561
If anyone is having any problems with the autonomic system I'd like to hear about their experience!
When I was in the ER the other night the doctor's thoughts was that I don't have a bunch of stuff going on I just have out of control MG. I think he's right. Now the the doctors know that some autonomic stuff seem to be going on and that has been confusing to them which has been holding off the whole MG diagnosis. Add on to the fact that things have been getting worse and I being a sick person not a doctor was starting to think I was having heart problems. Well things are starting to click. Thanks to my husband who finally is starting to listen to the things I've said and did a little research since I can't. Now I've been had this non stop headache for 3 weeks that they put me on Topamax at the hospital that's not getting any better. The problem with my stomach (more than likely my gut isn't moving things properly) that I've been on protonics for 2 months that don't touch it but I've only been having issue's since last hospital visit so about 2 weeks or so. My chest hurts non stop, even when I wake up which I take zantak as well for (also taking xtra strength tylenol on top of Topamax) my body can't regulate my temperature at all. My blood pressure is a mess because the autonomic system (pots) my PCP was thinking it might be MITO but I had seen this awhile ago but because my brain has been in energy conservation mode I forgot about it until my hubby brought it up. Anyway I have my compression socks on, legs are elevated and hopefully it will relieve some of the problems going on with the autonomic stuff going on so that my body can use stop using the precious energy on that and store it so I can hopefully get some stamina so I can do the work necessary to get out of this darn wheel chair I landed in. BTW I was an in my former life I was an ultra runner who's last race was 50 miles in March of 2012 and I did in 8 hours and 43 minutes. TOTALLY NOT to brag, because once you get to know me you'll know that's not the kind of person I am.
Any experience, knowledge etc when it comes to MG and the autonomic system would be greatly appreciated! I know it's rare, but the other options are MUCH even more rare.
Thanks
And hugs to everyone!
History so far for 2015
8 day in hospital 5 days of IVIG in Jan than to rehab hospital for 3 weeks than back to hospital for 6 days 5 days of IVIG than to rehab hospital for 2 weeks back home for 3 weeks then back in hospital for another 5 days if ivig and now home and its been about 11 days or so