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...
In addition to having trouble standing and sitting, Jeannie is having trouble typing, focusing, and using her phone, but was able to get through to us.
She is getting platelets today and frequent PLEX. She is being carefully monitored in the cardiac unit (not for heart trouble, but it is quiet and where they have the most comfortable beds in the hospital, she says), and the staff is attentive, including her wonderful PLEX team. Her neuromuscular doctor from Charlottesville is monitoring her care and in addition to getting in touch with the powers that be where she is, has sent a personal communication. (Insert sigh of relief. )
She says the Ensure is yummy but otherwise seems in her right mind and recognizes that may be a little strange, so no delusional symptoms. b.
She is getting platelets today and frequent PLEX. She is being carefully monitored in the cardiac unit (not for heart trouble, but it is quiet and where they have the most comfortable beds in the hospital, she says), and the staff is attentive, including her wonderful PLEX team. Her neuromuscular doctor from Charlottesville is monitoring her care and in addition to getting in touch with the powers that be where she is, has sent a personal communication. (Insert sigh of relief. )
She says the Ensure is yummy but otherwise seems in her right mind and recognizes that may be a little strange, so no delusional symptoms. b.
Thanks for the info. Glad to hear see is in one of the intensive care units. We are all concerned and sending positive thoughts that she will not have any serious breathing problems and will get well soon.
I also hope her doctor's determine if she had some underlining trigger that caused her MG crisis. I was luckly that my doctor's were able to determine what aggreviated my MG. I am now off those meds.
Bruce
luv and hugs to all
Annette
I appreciate the update.
I wish none of us had to suffer more because of MG.
What were the meds that aggravated your MG?Just curious to know.
Thanks
Lorraine
If you communicate with her again, please let her know that we are thinking of her and praying for a speedy recovery.
She is important to this group.
Olliepop
You asked what meds aggravated my MG?
Methotrexate. My doctor switched me from cellcept to methotrexate last October. At the start I was doing okay with methotrexate but the first of the year I began having more difficulty breathing.
I have COPD due to asthma..never been a smoker. With the MG and COPD the methotrexate possible side effects of causing shortness of breath was more than I could handle. I have done so much better after I switched back to cellcept.
Bruce
Also - just something to keep in mind - there is now a drink called Ensure Clear. If she likes the boost, then she is ok! But a lot of people seem to really like the Ensure Clear and it seems to be a but more pallatable/tolerable for people! Still packed with protein but not as thick!
Please let her know that I am sending my love and look forward to hearing from her again!
Love, Becca
Gail
Thanks B for the report.
Bruce
thanks for the update on Jeannie, sure have been worried about her! glad she is getting better each day. Tell her I said hey from Texas and to not rush it...
luv to both
Annette