Thank you Erin,
It is so good to hear from someone dealing with this.
When the doctor first suggested I went and did a lot of research online. I can't just let them say they think it's this and run all of their tests anymore. If they think it's one thing I want to see if I agree before they get to do all of their testing.
Anyway, when I researched it, it sounds like the thing that fits better than anything else as an answer for these weak spells.
I'm sure it's not fun to have (neither is MS or POTS, but really what disease is) and really isn't a good thing to be diagnosed with but at least if I get diagnosed I can know what it is and how to deal with it.
As far as the breathing goes, I have been on pulse-ox monitors while I was having weak spells (during the five day hospital stay) and there was only one time that a nurse noticed something about my breathing. She came in the room in the middle of the night when I was having a weak spell and kind of shook me and started listening to my lungs and kind of yelling to me to take deep breaths.
After that I heard her comment to someone else that I wasn't hardly moving any air. I have only felt that way one other time. Other than that I can breath, it just takes a lot of energy. The doctors keep telling me that my oxygen level is fine and I'm breathing just fine.
I had an exercise test two weeks ago where they monitored my heart and breathing while I pushed myself exercising to the point I thought my legs were going to give out and I was going to fly off the treadmill. They also measured my lung capacity, and said it was good. But the blood they drew before and after that test is what showed the abnormality and why they want a muscle biopsy.
Sorry that got long again, it's just so nice to be able to talk to someone who understands! I'm so sorry that you have MG but I'm glad you're here for me to talk to. Thank you, thank you, thank you!
Kristie
Quote:
Originally Posted by erinhermes
Hey Kristie! I am so sorry to hear you've been through so much! It is so
frustrating!
I am still a "newbie" - having only been diagnosed March 6th and having my thymus removed on April 22nd, but I can tell you that extreme fatigue was my first "real" symptom. I was always tired! Always!
Then my voice started to become "nasally", followed by all the MG symptoms, so I guess I have classic MG.
I too have to lie down immediately - immediately and rest. It really irritates me, as I was always so active a while back.........
Unfortunately, to me at least, it does sound like you have MG symptoms. Again, I'm still a "newbie", but you do sound a lot like I did. With lots of meds, I am somewhat able to resume my old life, though there are days when all I can do is lie around and sleep. 
I also hve very low blood pressure, though I have no idea why. My usual in the ICU was 70/40. The nurses woke me up to check up on me.
The thing you CAN'T ignore are the problems breathing! You really, really cannot ignore it!If you have that problem again, please call 911 or have a preset call to your hubby,mom, whoever to make sure they will call for you. You do not want to be intubated. It is not fun!
There are a lot of really great, smart people on this site that have dealt with this disease a lot longer than I, and should be able to give you really great advise!
Until then, hang in there and remember to call if you can't breathe!
 Erin |