Mother newly diagnosed with MG
Hi everyone,
I am new to the forum and are from the Middle East, and looking for support and feedback. We
My mother is 70 years old and she was recently (last month) diagnosed with Myasthenia Gravis. It first started with double vision, and after a week or so it progressed to muscle weakness and fatigue, getting very tired whereby her doctor suspected it is MG and prescribed her Mestonin 60mg, and asked to take more blood tests. After another week or two it progressed to breathing problems, short breathes while speaking, and having difficulty sleeping because when she tried to sleep her short breathes worsens! Imagine poor mother cannot sleep 🙁((
Last week her doctor confirmed she is positive of MG.
Five days ago she got attended into a local hospital and is taking the IVLG for 5 days, today is her last day.
Today is her last and 5th day of the IVLG. But she is not improving, rather I feel she is weaker than 5 days before when she started her IVLG. I think her MG is a strong one. Maybe the IVLG is not working with her? Or does it take more time to kick in? Shouldn’t she feel better while she is on the IVLG?
She can barely speaking, heavy breathing and short breathes, too tired and heavy fatigue, can’t sleep well. She cannot walk only few steps then gets too tired to continue walking.
I am attaching image of the IVLG she is taking now, and today is last day.
I would also like to mention that my mother is a cancer survivor. She survived of cancer back in around 1998-1999. Also her heart is not very strong, but thank God it is stable.
We are trying to search for some best doctors in USA or Canada at least for online consultation. With her current condition she cannot travel.
Will appreciate all the support I can get!
Thanks and pray for her!
Mo81, treatment of MG is as individualized as we are individuals. I'm glad she's responding now to the plasma exchange. Sometimes, it takes a few tries and different treatments to finally find what helps. IVIG did not help me, but it has clearly helped a lot of other people. Just like Juliana said, keep good notes on her treatment and her responses to it. I was fortunate to have found a treatment that works for me fairly quickly, while others are looking for quite some time. Hopefully this link will also help. https://myasthenia-gravis.com/plasma-exchange-ivig
Best wishes! - Janice (Myasthenia-Gravis.com Team)Good Luck to your Mother & you. This is a vicious disease . Don't forget to get rest for yourself as well;sending best thoughts & prayers Angel
is it possible your mother has additional breathing issues? I was recently diagnosed with stage 1 COPD, and just last night I did asleep study. Prayers to your mother, and your family Hi again
Just to update that my mother underwent Rituximab 1000mg treatment last night. We are not seeing any improvement yet, she is very weak with breathing difficulties.
Any idea how long it takes for the Rituximab come into effect and respond?
Her anti-MuSK level is 35. Looks very high.
As you work with your mom's team, you'll discover that this condition has many forms. So many people react differently. Keep good notes, because even the best medical teams need a lot of information. The good news is that most people respond and improve. Juliana (team member)
