It's been almost a year now since my sister was diagnosed with MG. She nearly died with a staff infection which caused her muscles to stop working her lungs and she had to be put on a ventilator for nearly 2 weeks. Finally she got rid of the staff infection and things were looking up. Then she got a kidney infection and went to the hospital ER. While in the ER she fell and broke her hip. She had to have a partial hip replacement. Now the Dr.s are saying her bones have become "soft" from the medications she is having to take for the MG. Has anyone here heard of anything like this? I am trying so very hard to stay positive for her and she is so frightened. Any information would be greatly appreciated!!

One last question...does it ever get better or is this just the way her life will be from now on??

Hi, how old is your sister, and how long has she been on her meds? Prednisone can cause thinning of the bones. Is she taking it, and how much? Orwhat meds is she on.
She may need a more aggressive treatment, and she may also need to see a neuromuscular specialist who specializes in MG. Sorry to say,Not all neuros are equal..smiles.
My first neuro was really nice, but she really new very little, I now see a neuromuscular specialist through the MDA, and what a difference.
It will get better, but it does take a lot of time to work it all out.
Does she have other medical problems other than MG?
So many things play in this. But the meds, prednisone can cause the thinning of the bones.
My first year was horrible too. It's a terrible roller coaster ride.
best of wishes
Love Liz

Since she has been in the hospital so much she actually has a team of Dr.s working on her. She is in Loma Linda University Hospital, supposedly one of the better hospitals. I can't personally tell you how good they are and I sometimes wonder myself...sigh. She was taking prednisone and that is most likely what has caused her bones to get soft---or that is what we are being told. They have stopped giving her the prednisone but it is the prednisone that was helping with the Myasthenia Gravis so much. Just can't seem to win!! My sister is 57 years old and up intil the onset of this disease she was the picture of health. She walked her dogs 3-5 miles each day. She lives in the mountains and was always an active person. She ate such healthy foods...I only wish I ate half as healthy! Her only problem before the MG hit was she had a tooth problem. She went to the dentist and had it fixed and wham! That very same day she started with the first symptom--double vision. It was one symptom after another after that. Don't know if the tooth/possible infection had anything to do with this but it is odd. Her wieght "was" good (now she is as thin as a rail). In this last year she has gone from a perfectly healthy person to a sickly, very depressed person. It is ripping me apart watching her go through this. We talk daily although just before she was diagnosed with MG I moved 3,000 miles away from her. Now we still talk by phone daily. I'm just trying to find out any and all information there is regarding Myasthenia Gravis. I need to know.....sigh. I guess I want a miracle. But miracles do happen and I will not give up!!!

Prednisone can effectively cause bone thinning or osteoporisis but I doubt it would act in a year or so. Considering her age, your sister had probably that condition before taking prednisone.
To obviate that risk, it is recommended, prednisone or not, to take Calcium (1000 mg/day) and vitamine D supplements.
There is also an other medication (Cyclosporine A) which might be prescribed for MG when when prednisone cannot be used.
Maurice.

About the relationship between MG and the dental work, some antibiotics can severely worsen MG symptoms, that's why it is imperative to mention your MG affection to any health personel (MD, dentist, surgeon…) you are in contact with, so that they can choose the medication appropriate to the situation.
Maurice.

Yes, we now understand all of that. She had never had any type of symptomes when she had her tooth fixed. I don't even know if she had an antibiotic when she had it repaired.
I have another question. The Dr.s have mentioned an A-B Fistula and an A-B-V Graft. Has anyone here heard of these? I did research it on-line but didn't find any information that would relate to treatments for my sister. Or at least I don't think they had any relatioship to treatments for her!! I am very anxious to better understand what they are talking about. As I have explained we live 3,000 miles apart and the Dr.s won't tell me much. I have to get most of my information from my brother in law or my sister. Thanks for any information.

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!)