I know it's hard. I am so sorry. It will get better. It really will.
I remember how hard it was to breathe - before I was diagnosed - it was so scary. My hubby and I were heading up to Huntsville to see my Grandparents and I was really having a hard time, but I just knew once I saw my Grandma it would be OK. Looking back, I should have headed to the closest ER, but @ that point I had no idea how sick I was..........
MG does stink but it could be much worse. MS scares the heck out of me. So does the big C! At least for MG, there is a strong chance for lifelong remission. Just think of it! Lifelong!
One of the ladies in my support group had her thymus out and has been in remission ever since - 10-11 yrs!
It does happen! Plus, MG does not lessen your life span!
I am on a ton of pills and have gained a lot of weight, but now I can eat, walk, breathe!
You may want to ask about IV IG or the plasma exchange once you are diagnosed. I know for me IV IG is GREAT! It makes me feel like a million bucks! I'm in this week for a 5 day round of it, and just know that this weekend is going to be great!!!!!!
Can't wait to hear from you again!
Erin
Quote:
Originally Posted by nemsmom
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
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