Inclusion Body Myopathy???
Find a Conversation
| Thu, 07-10-2008 - 11:58am |
Has anybody heard of this disease? If anybody has, or knows someone that has and knows something about it, could you let me know. This is the case:
Good friends of ours dropped in, we knew they were coming about 1:30 or so the other afternoon, and she went to Florida as they are snowbirds and so we haven't seen them for about 6 months. When they went to Florida she seemed healthy, but had a "possible" gall stone and the dr. told her to keep drinking water, and even at this point this problem is still there, she hasn't passed it at all, and it doesn't hurt her at all. Strange.
Well, also, she was feeling very tired while in FLorida and they put her through a run of tests, and they came up with Inclusion body myopathy. None of us have ever heard of this, but from looking it up it seems to be related to the MD family, and in this short 6 months of time, she has lost 20 lbs., her legs have lost muscle but her feet are alright, her arms have lost muscle but her hands are alright, and they told her to use a cane, which she is fighting but she was walking along the pool in their complex and her toes are curling up and she tripped, which I guess toes can cause that, and she fell into the pool. This is when the dr.s got serious about this, she has to wear special shoes so that she doesn't trip, her body supposedly is not producing something it needs and only replenishes it about every 3rd day, so in essence she doesn't really feel good and very weak and tired most of the time. When she wants to cross her leg, she takes her two hands and picks up her leg to cross it over the other. When they left we have about 5 steps to get up to the driveway and she had all she could do to hang on to the rail and unable to use her hands to lift her legs and her DH and I were behind her and he pointed his finger to her problem, and I almost cried as he never told us that it was this bad. If she got this bad in less than 6 months, I just don't know what the next 6 months will bring.
They have no cure for this, not even med's that will help, so the best they can hope is that a clinical trial will come along that she will be accepted for. DH held his arms around her going up our "uphill" driveway, and when she got to the car she managed to open the door and leaned on it for support as we gave her hugs, and she said to me "Don't worry about me, it's not life threatening" and here she is trying to comfort us as we were trying to comfort her, but who has words of wisdom for a friend when she has this terrible disease. She wrote to me this morning and told me how depressed she was, and what a wonderful time they had here, and they stayed until 9 p.m. which we didn't expect but she said it took her mind off of everything and of that I was happey to hear.
Well, I've vented, and wonder why bad things happen to good people. These are the people that other friends have shunned and now I understand why--they didn't tell them that she was having problems and so nobody saw them but they happened to tell us and they feel comfortable with us. And we feel comfortable with them, but now I feel so terrible about this, the first night after they left the tears kept rolling down my face and I can't tell you how "down" I feel about it all. So~~~~~~~~~~
ending for now and wishing you all a good day and love and hugs to all. Please, if anybody knows anything about this please tell me, I can't find any good conclusive information on it and neither can they.
Hugs to all.


Bea I know that it is an inherited muscle inflammatory disease, and very few things like you say helps it. And I think they lose a lot of muscle tone. mostly in men after 50 but women do get it.
From what I know its very painful and very weakening. I am sure sorry that your friend has been diagnosed with it, although i think that there are seveal types, because it falls into the catagory of many.
My goodness isn't amazing what we older people can get, just like they are waiting to sling us another problem, as if having George Bush for President is not enough.
Betty L. Keep and Angel on your Shoulder & a prayer in your heart.
Bea,
This is the first I have heard of it, but now I am curious and will look it up. I hope they find something that will help her situation.