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...
Hi, my dad has MG and is currently in the ICU again. he was diagnosed a few months after a breathing crisis last year. he also has severe rheumatoid arthritis, since childhood, which can't be helping the situation. he has been on mestinon since november or december. they did one treatment of IVIG already, 2 or 3 weeks ago, when he was first admitted to ICU not being able to breathe without intubation. they tried to remove the tube but had to re-intubate. is there still hope that he will regain the ability to breathe on his own? 3 weeks is so long. they may do a trach today since he still cannot breathe, his diaphragm is too weak. i've never seen anything like this! blah! i know i don't have MG myself so i feel kind of guilty joining the group, but i'd love to see how everyone is dealing with it.
Please keep reading and asking any questions - everyone here is lovely and a great support. I hope your Dad starts to improve soon,wishing you all the best :) x
Welcome. Please also post on the main forum. Sometimes people don't pick up the advice forum because of the way the site is set up.
I don't know where you are, but as sick as your Dad is and has been, I am surprised that he hasn't had more aggressive treatment before deciding that continued respiratory support will be necessary. Do they have the facilities to do PLEX as well as IVIG? Is he already on prednisone or other medications beside Mestinon?
I am so glad that you are concerned and researching for your Dad. Those of us who are older grew up at a time that we took the doctor's expertise for granted. You just can't do that with MG and the fatigue of autoimmune disease can be overwhelming, especially combined with age. Treatment decisions can be clouded. MG is a treatable condition. Your father has certainly not exhausted all the opportunities there are to get better, and I hope you will encourage him and the rest of your family. There is a lot of information about MG in the Links Group (bottom right hand corner of main discussion page). myasthenia.org has a Handbook for Healthcare Professionals which gives a pretty good overview of the disease and some of the treatment options. Keep asking questions here and of his treating physicians, and let us know how all of you are doing. Hang in there, b.
We are in Rhode Island. They haven't mentioned anything called plex that I know of. He has done mesitinon since the end of '13 and has been on prednisone I believe since before then because of the RA. I was kind of surprised they weren't more aggressive as well.
They scheduled his trach for today, since after 3 weeks he still can't seem to use his diaphragm. I'm hoping they have a plan!
Thanks again, I'll keep reading up!
Since your dad is already on mestinon, prednisone and had at least one IVIG treatment I don't know why they wouldn't give plasmapharesis a try. That actually removes the bad things from the blood that is doing the harm. Then follow that up with more IVIG. Some people do both on a regular basis. A lot depends on the doctors that are treating him and how experienced they are with MG. It's a very difficult disease to treat without the proper experience and knowledge.
I would have a frank conversation with his doctors ASAP and explore more options and treatments. Once the trach is done it is hard to have it removed. The longer it's in, the harder it gets to breathe on your own. Trachs are hard to keep clean and since it's always open they are highly susceptible to infection. Take as much information to his doctors as you can and ask them why plasma exchange, more IVIG treatments or both haven't been done.
I hope that you get some answers and pray that a trach is not necessary. Welcome to our MG family. Keep asking questions and learning everything you can. You are a good daughter and thank you for reaching out when your dad can't.
Hugs to you..
Aloha,
Angie
I am also from Rhode Island.I am in Warwick What hospital are you being treated at? I ended up going to MA to get treatment, as I was very unhappy with the neuro's here. I can suggest Drs. if you are interested in going to MA.
Judith