My sister was diagnosed with MG four months ago. She began falling about a year and a half ago and then progressively got weaker....to a point where she is now unable to walk without a walker..if at all. Some days are worse than others. She has had "NO" ocular problems...therefore I feel she may have another, more serious disease than MG. She has lot about 40 pounds and is just skeletel in appearance. She received third degree burns a month ago while trying to take something out of the oven and just got out of the hospital after having skin grafting surgery. She has been told she need physical therapy to build her muscles up, but when the physical therapist came by yesterday, he advised us that he had done some investigating into MG and he did not think it would be the best thing for her. He advised us to try to get more information as the doctors do not seem to know how to treat the MG. She has received 3 IVIG treatments and has still gotten progressively worse. Please advise what we should do.
The first thing you need is a second opinion and a review of the diagnosis,
in other words someone should look at the testing which was performed to
establish this diagnosis. the fact that she has no ocular involvement is
atypical but does not exclude the diagnosis of MG.
the diagnosis shopuld be reviewed for the presence of typical antibodies
in the blood, response to the tensilon test and EMG findings, if things
are not going according to plan in terms of therapy it is always a good
idea to review the initial diagnosis, other causes of weakness such as
proximal myopathies which may mimic Myasthenia should be also excluded.
Physical therapy is difficult in MG since rest is very beneficial and pushing
to hard with exercise will make the patient weaker.
if you wish to have the situatuion reviewed here at the Cleveland Clinic we
have an expert in the disease here Dr Kery Levin, his appointments
number is (216) 444 5559.
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