i was just diagnosed with myasthenia a year ago too. And though i have not had as many problems as your sister it almost seems to be universal (from what I'm reading in the forum) that the first year is the WORST! Can't speak for following years but hopefully it does get better. she is lucky to have a sister who cares so much. I am basicly on my own in this and it has only been recently that my new chruch family has steped in and been my champions of emotional support.

I don't have all the answers to you questions, as my neuro and i are only still talking about some of the therapies that you mentioned. But i can vouch for the worth of a good support network.

there are a lot of things that i have done research on in the past few weeks trying to work with my neuro to decide what therapies would be most effective/that i am willing to endure. I have heard that predinsone does have a LOT of nasty side effects, including bone thinning. unless your sister has been tried on it with no effect, i would suggest the drug that I'm currently using MESTINON. I have found that it works GREAT for about a year but then starts to require much higher doses (about every 3 to 6 months and then eventually the sideeffects out weight the pros). BUT it can be a life line as other theripies are started. Espcially when the drug is first started.

i have myasthenia that went from occular only to generalized in the past year. it can be scary but with the right neuro and treatments normal life can come much closer to being achieved. you might want to suggest to her that she has the antibody to the MuSK receptors. This type of knowledge can be very valuable in figuring out what treatment options might work. That is the point that my neruo and I are at now.

Good luck to both your sister and yourself!
bobcatsrule

Thanks for taking the time to reply. I am so very sorry to hear you are also suffering with MG. Not a nice disease. This year, her first year with MG, has been devestating. She is near death one month and back home for a week or two and back to the hospital. Her major problem right now is infection--staff and others. Seems the infections came with the ports she had put in (several times so far). It's a horrible roller-coaster-ride for sure. I wouldn't wish it on anyone. I did my daily call to my sister this AM and was informed she is back in ICU----problems breathing again. I can only hope she will stay strong as I will stay strong for her. That and praying--that's about all I can do. Yes, getting informed is also very important. I just wish they had a cure---I'm sure we all wish that! Well, my friend, you take care of yourself. You are never alone. I have found some wonderful people to talk to here and on some other forums. I will pray for you as well as my sister.

Well my sister is back in ICU---more resperatory problems! She is also a bit delirious and not making much sense. I know lack of oxygen can do that but the Dr.s don't think that is what is causing it. Maybe the variety and amount of drugs they keep giving her? She is scared and weak. As good as the hospital is that she is in I don't think they know a lot about Myasthenia Gravis. It sure seems like it. Do any of you know of a Dr. that is "known" for their work with MG patients? Perhaps I could contact him/her? I just don't know what to do.....sigh....

There are a few "well knowns"...if you want to private message me and tell me where you are located, maybe I could help you locate one closest to you.


Off the top of my head, there is:

Drachman @ Johns Hopkins...he's the "granddaddy" of MG research, not sure how much he still practices

Sanders @ Duke University

Henry Kaminski @ St. Louis University

Richard Barohn @ University of Kansas Medical Center (when he was in Dallas, a friend of mine had him & thinks he's brilliant!)

Ro, your information was great. I did follow up on it and have gotten some response. I just received a call and my sister had to go on the ventilator again today and she is going in for surgery. From my understanding it is to put new ports in. She is so terribly weak I just pray her will to live isn't weak also. I keep thinking I am doing to little to late. I have read where others here have gone through being in the hospital with their Myasthenia crisis and been put on a ventilator and have made it through. I can only pray and hope.....I feel so helpless...sigh.......

hiya cynwldkat,
my heart goes out to you and your sister!!!
I have mg, and a big sister who is always there for me, so I know how much your sister would appreciate all you do for her!!
Dont feel you are doing to little, I know even if my big sister and I havn't talked for a few days I know she is thinking of me.
Your sister is in my thoughts, and prayers, and as Im sitting here crying cos I now how much sisters mean I truly hope all goes well.
You take care
redtail

I cannot say "thank you" enough for your reply. It means the world to me. I get so worried and down...sigh. It's people like you who are so generous and caring that makes it all worth while. Thank you my friend.

No Problems at all, I think this is a great place to come for support and comfort when we need it, and are able to give it when someone else needs it.
Still thinking of you and your sister,
redtail

Thank you redtail and everyone. Well the roller coaster is on it's way up the hill now.....great news..my sister is off the vent and looking to go home maybe as soon as Monday. But I've learned through experience not to give a sigh of relief yet. She has done this same thing many times this year. I really would like to feel confident about her returning home but I know this is far from over or really a lot better. At least she is feeling better right now and for that I am thankful.

YAY

I'm so happy she's doing so much better.
Yep MG certainly makes you take an hour at a time when its bad, but hopefully soon it will start to level out.
Even after 5 years I have days when my strength is not good and I think, what did I do?!?!?! But I can look back and think I'm glad Im doing so well now, even on my worst day.

Hope all continues to go well
take care
redtail