Hello All

My name is Aman and I have had a similar experience.  In high school, I had elevated liver enzymes but no symptoms.  I weightlifted, ran track, and played hours upon hours of basketball.  After taking classes in college and not being as physically active, I noticed one day that I could not tippy-toe.  Doctors performed 2 muscle biopsies and concluded that I had polymyositis.  However, treatment with prednisone and methotrexate did not decrease my CK levels (around 16,000).  After a 3rd biopsy, I was diagnosed with LGMD-2B.  I have not regained any strength and I walk with a cane now.  I have been put on Dantrium 100 mg and my CK levels have gone down considerably (5,000).  If anyone has any suggestions for me at all (diet, exercise, research treatments etc) I would appreciate them.  Thanks.

Aman   

 lucinda_hodges <glhodges@...> wrote:

Thanks Brad for the very helpful information on diagnostic testing. 
I've been wondering if anyone in this group has had a similar
experience of rate of progression of muscle weakness or similar on-
going CK values to my disease course?
Up until three years ago I was normal (fit enough, a scuba-diver and
a very happy person who enjoyed life).  We had spent the summer
holiday travelling part of the coast of Australia and life was truely
brill - I was 33.  I started back to school for the new year (I'm a
chemistry teacher) and I began to notice that I had difficulty
getting back onto the dive boat when I was fully kitted with my
weight belt and tank (I used to help out with the school dive club). 
I also couldn't lift a TV we had at school that I hadn't had any
problems with lifting the term before.  Over the next 10 weeks I lost
16 kg in weight.  I couldn't run, it was really difficult to get up
out of a chair, walk up stairs, if I lay down I couldn't sit forward
at all, turning over in bed was difficult, it got to the stage that I
couldn't drive the car because I couldn't turn my neck to check what
was around me and holding my legs in the positions needed to operate
the peddles was impossible.  I was sent to see a specialist
neurologist who did a muscle biopsy.  The muscle biopsy showed
inflammation.  My CK was 15,500.  I was put on 50mg of Prednisone
daily.  I was sent for a second opinion to a specialist Rhematologist
who agreed with the diagnosis.  My CK was 10,000 so she also started
me on immune-suppressants (the dose was increased to 20mg once
weekly).  My CK dropped and flucated around 5,000 for the next year.
As soon as I was put on the Prednisone I had problems - I kept
crying, alsorts were happening in my head.  My specialist said it was
an unfortunate side effect of Prednisone and that he would get the
dose down just as soon as he could.  I started having palpatations
(they called it) where my heart kept beating really fast for no
reason when I wasn't doing anything - maybe it was the weight loss or
stress or something.  I'm not sure why but the Rheumatologist thought
my heart muscle might have been involved and so sent me for an EMG. 
I was leaving the hospital after the appointment and collapsed in the
hospital.  They took me to ED - I had really bad pins and needles in
my hands and feet.  The blood tests they did showed that I had raised
levels of Troponin I (a substance that is released into the blood
after a heart attack.  It's also suppose to be made by regenerating
muscle tissue)- That week I had a heart biopsy which was found to be
normal, I'd just fainted!  My muscle strength over the next year did
improve slowly and I returned to near normal strength.  My mental
condition however deteriorated and things got so bad that they had to
drop me off the Prednisone fast - I'd been on 30mg of Prednisone for
all that time.  The mental pain I suffered was unbearable. I've spent
3 years with clinical depression and was put me on relevant
medication for it.  About a year ago I decided I'd had enough and
stopped taking all my drugs.  Without the immune-suppressants my
specialist expected that the polymyositis would flare but it didn't. 
My CK stayed between 3,000 and 5,000 and I didn't get really weak
again.  My specialist thinks now that it might be LGMD type 2B
because it is the same muscles that are affected (muscles closest to
the trunk) and it's not following the normal pattern for
polymyositis.  I thought that LGMD was a progressive disease and that
you wouldn't regain strength once it was lost.  It doesn't really
seem to be following a typical LGMD pattern either or have people had
similar experiences of being weak and then getting stronger again? 
What typical CK values do you all have?
Any information re your experiences would be really appreciated.
Lucinda 




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