Hi
Today I went to see my neurologist and was given the results of the biopsy that was done on my left leg back in January this year. The news is not good, but I don't think it is all that bad either.
They have found that I have
Nemaline Myopathy. It is a degenerative muscle disease. There are two different variants of it. One can be treated, the other can't. My neurologist is unsure which variant I have, at the moment. I will end up in a wheelchair. This is no surprise for me really, my left leg has been giving me worse problems over the last 9 months. This last month or so, I have had discussions with my wife about getting a wheelchair anyway. Every morning I bounce off the walls when going down the hallway towards the kitchen. I suffer terrible cramps in my left calf, especially if I try to stretch my left leg, like you do first thing in the morning. I also suffer when the muscle starts to
tremor like a jackhammer. I can't control it so I just have to wait until it stops. It often happens when I'm asleep and wakes my wife, but not me. I just sleep through it.
The treatment requires a special transfusion of a blood product, not sure what blood product that is at the moment, but not whole blood. It will cost about $20,000 for the first 5 days, followed by $4,000 to $5,000 a month. I'm not totally sure, but I think the treatment is supposed to be for the rest of my life. Fortunately, for me, the government will pay for this, but only IF I meet their very strict criteria. I have been rejected once, but it is under review and I might get through second time around.
This year is turning into a really crazy one for me. I will be back in hospital next Tuesday to have surgery on my AC joint, which I dislocated about three years ago when I fell of a verandah and landed on my head and left shoulder (a fall of about 4 or 5 feet), dislocating my
AC Joint. Luckily for me, I landed between two cement paving tiles and avoided hitting my head on either of them. Because of the injuries I suffered in my
motorbike accident, it was decided not to do anything about it at the time. This has caused me a lot of pain and, finally, after three years it is getting put back in place. I admit myself into hospital, very early in the morning, have the surgery short afterwards and, all going well, return home the next morning. One and a half days in hospital.
Mark