Sorry I didn't respond earlier but it has been a rough day. I have been weak all day.
I have barely eaten today because for most of the day I have been too weak to chew. I really hope tomorrows better, I have to be able to take care of my four year old daughter and two year old son.
I'm sure things will get better when we know what it is and can start doing something about it. Only eight more days till my muscle biopsy. I hate that I have to wait that long. Then I don't get the results until March 17th.
MS doesn't shorten your life span either, and they are coming far with the advances. It does make things hard, I think my memory and other cognitive issues are the hardest for me as far as that goes.
I take about 13 pills every morning, two-four in the evening and an injection three times a week. But as long as it helps I'm happy to do it. Only cause I have an auto injector and don't have to see the needle puncture the skin other wise I would be sick to my stomach.
One Neurologist wanted to do Plasmapheresis or IV IG back in December as a treatment for my MS flair because I can't do steroids (I had a bad reaction) but they didn't because it would mess up my testing for MG. So once we figure this all out we may be back to that idea. I'm glad to hear it helps so much, that may sway my decision.
As far as the breathing issues go, I have been on monitors while having the weak spells and feeling that way and my O2 sat never drops. But lately when I get my weak spells or I'm weak, if I don't focus on my breathing and try to go to sleep I will wake up feeling like I'm not breathing. Then if I focus on my breathing I can get it to where it feels like I'm breathing enough to sustain myself but it's still a little hard.
I have told the doctors this (I can't remember if I told my Neuro-Muscular Neurologist who is testing me for MG) and they don't seem concerned since my O2 sat never dropped while being monitored. Do you think I should be more concerned? It's scary but I don't know what else to do.
Thanks again for being here to talk.
Talk to you soon.
Kristie
Quote:
Originally Posted by erinhermes
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 |