Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Breathing issues and Myasthenia

Raquel-Childs
Raquel-Childs
Hello everyone, I'm Raquel and I'm a 36 year old mother of 3 children.
I was diagnosed with myasthenia Gravis in May 2011 and this has been the hardest thing I've ever had to deal with! I was living in Texas until December, I came home to Michigan! Well my main problem now is I'm always short of breath with any activity. It has recently got a little better so I was taken off of prednisone and put on Imuran. I just want to know is their someone else that has experienced this? I also take Mestinon 90mg about 3x's a day and a timespan at night and receive IVIG for 3 consecutive days once a month. I would really like to start back exercising to relieve some stress
revelationman1911
revelationman1911
EXERCISE,,,,WISH I COULD,,,,I SOLD MY TREADMILL BECAUSE THE AFTER EFFECTS OF WALKING ON IT WAS NOT WORTH IT.....SOMETIMES I CAN GO OUT TO WATER THE FLOWERS IN THE YARD AND I FEEL LIKE I AM SO OUT OF BREATH,,,,,AFTER I WALKED ON THE TREADMILL FOR 15 MINUTES I PAID FOR IT 3-4 DAYS....GOT SO WEAK ALL OVER,,,AND I SLEPT A LOT JUST TO RECOVER,,,PLEASE DO NOT OVER DO IT, WHEN YOU HAVE DAYS YOU FEEL SO GOOD AND YOU REALLY WORK PRETTY HARD, YOU WILL PAY FOR THE OVER EXERTION FOR THE NEXT DAY OR TWO,,,AT LEAST I DO...THERE ARE DAYS I CAN GET OUT AND WALK AROUND WAL-MART AND HAVE NO PROBLEMS, THE NEXT DAY I CAN WALK 50 FEET AND HUFF AND PUFF TO CATCH A BREATH,,,NO JOKE....STRESS IS NOT GOOD FOR US M-GERS (MYASTHENIA GRAVIS PEOPLE) ALSO,,,BUT STRESS IS EVERYWHERE,,,ITS JUST HOW A PERSON MANAGES IT THAT MAKES THE DIFFERENCE....SO THE ADVISE THAT WAS GIVEN TO ME WAS REST,REST AND REST,,,IT IS SUCH GOOD ADVISE,,,,,TAKE CARE

TERRY
Raquel-Childs
Raquel-Childs
Thanks everyone for your support, I hate the fact that we all have MG or some1 close to us that has the condition, but i am so grateful to be able to talk with some1 who understands. I'm feeling a little down now because I have also gained 60 lbs that need to come off asap and Exercising was always a remedy for weight lost and stress relief for me. so now what? And Terry the other day I had a great day so I decided to take a walk, I walked slow and took as many breaks as possible but the next day was a bad day for me. and I think I'm going to make an appt with a pulmonologist just to see what they say
Thirteenblessings
Thirteenblessings
Hi Raquel,
I have yet to be diagnosed but do have breathing problems. I wear a cpap and oxygen at night. It helps a huge amount. I could feel my brain being starved of oxygen, but couldn't do a thing about it. I too am weak and breath fast and shallow when I exert.

I can get up and walk to another room and be breathing harder when I sit back down. I don't do much at this point but sit all day, they are not yet treating me. I have been passed back and forth several times.

I get really discouraged, but if all else fails, it will get bad enough that they cannot ignore it anymore, or pass me back and forth. They won't have the time. That is what I feel will save the quality of my life, that they will see and cannot deny the severe symptoms that I will have

, and they will finally treat me without this test or that test positive. There are so many who are not. Good luck, love carla
Cabbage7
Cabbage7
Hi, Raquel I also have breathing difficulties, which come along with MG. I sleep with a C-Pap machine like Russ because I can't lay flat because I can't breath. Things will get better as soon as they can get you on the right treatment. I have had several treatment of ivig which only last maybe a couple of weeks and I would have to go for more . I am on 20mg of Prednisone and 60mg of Mestinon 4/5 times a day. My next treatment is Cellcept, which I will begin in January. You must rest as much as possible. My faith is what get me through. Oh, I have Sleep Apnea also. I will keep you in my prayers. Cabbage7