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...
I was supposed to do thymectomy back in April. But cancelled it until i got more info on it.
my recent visit with doctor showed my bulbar muscles have weakened more, despite increasing prednisione and Imuran. SHe wanted to admit me straight away for Polygam treatment - something she described as a drip for five days?
i told her I'd come back next week for that treatment. Then also discussed possibility of thymectomy.
I decided it was still a good option, given my high antibody count, and the fact that steroids were not helping bulbar muscles much. It was the only long term solution. Polygam and plasmatheresis are temporary.
Though I wil be doing plasmatheresis before the surgery. i'm being admitted Monday for plamatheresis to prepare me for surgery. Then likely doing op on Wednesday next week. with more plasmathereisis after. My doc says neck is so weak that airways can close and I can go into crisis.
Pray it all goes well. Though I feel pretty posistive about it.
my recent visit with doctor showed my bulbar muscles have weakened more, despite increasing prednisione and Imuran. SHe wanted to admit me straight away for Polygam treatment - something she described as a drip for five days?
i told her I'd come back next week for that treatment. Then also discussed possibility of thymectomy.
I decided it was still a good option, given my high antibody count, and the fact that steroids were not helping bulbar muscles much. It was the only long term solution. Polygam and plasmatheresis are temporary.
Though I wil be doing plasmatheresis before the surgery. i'm being admitted Monday for plamatheresis to prepare me for surgery. Then likely doing op on Wednesday next week. with more plasmathereisis after. My doc says neck is so weak that airways can close and I can go into crisis.
Pray it all goes well. Though I feel pretty posistive about it.
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Will be thinking of you next week and wishing you well in all senses of the word.
b.
I really wish i had done it in April, as i was in better state of mind then. Now with steroids messing with my mental health, I'm feeling overly anxious, scared etc. Feelings which usually, before the drugs, I'm not used to feeling..
It know its normal to be afraid, just hoping all goes well..
It's hard to reach beyond the drugs to the "real me, the strong fearless me" to get through this surgery.
Need all your well-wishes and support
Thanks!
Curt
I, (where we are similar pages with the progressiveness of our MG and, unfortunately, finding prednisone to effect us the same way) have done a lot of looking into this procedure too and it's "gamble" for some relief and the possibility of slowing down the progressiveness of our symptoms, and/or leaving us with less need for medication in the future. I believe that you are making a wise and good decision. I plan to have this done as well. My thymus is "moderately enlarged". Even through the confusion of whether it is worth it or not... I have a cousin with MG who had a thymectomy 10 years ago. She states that it stopped her ambulance trips and reduced her medications! She is wise and informed and supports this decision as well! GO FOR IT!!! Can't wait to hear how it goes!!! LOVE YA!!!
Good luck to both of you...and hugs!!!
Curt
Hugs,
Sherry
Thank you for your kind words of encouragement and support. And hugs:)
It's giving me a boost into a more positive frame of mind for the surgery.
Will let you all know how it goes.
HUGS
I know it's not an easy decision and I know you have given it much consideration and this is the best answer for you. I fully agree, I made the same decision this time last year. I am so glad I did it and it's behind me. It went well and the plasmapheresis before surgery was life changing in itself, It made me feel more normal than I had felt in a year. So I had a few days of thinking I didn't need the surgery, lol. I will be praying for an excellent outcome for you.
Cathi