1999 Diagnosed Generalised - Just after birth of daughter
aged 34 at time, Tensilon Test and later Thymectomy
HYPAPLASIA. Symptoms wide ranging breathing,eyes,speach the whole lot. Condition had been in remission however suspect it has been back for 18 month plus. She has difficulty in hot/warm weather. She drags foot and has a little difficulty with breathing, Almost like a mild asthmatic.
Has Reynolds syndrome.

After seeing doctor 3 - 4 weeks ago who tested for a number of things i managed to get an emergency Neuro Appointment for her-

Consultant was abrasive but appeared to be very knowlageable
My wife had outlined symptoms she has had (NOT NECESSARILY AT TIME). Consultant wanted to admit her to hospital immediately which caused considerable upset. She did not do so. As a compromise consultant arranged an EMG for following day which did indicate some weakness but not too severe. Antibody test results are pending. We saw consultant again 2 days ago (3 times in week) and his main concern is about the breathing, After a little discussion we brought up the question of Steroids (which my wife had said she wished to avoid up to that point). Consultant's eyes almost lit up at this and anyway my wife is now on following:-

Mestionon 60mg x 6 daily
prenisolon 2.5mg every other day increasing weekly
propanthelene
Weekly visits to Neuro

Additionally Neuro has stated that we will be having a little chat in 6 months time with a view to going onto
Azathioprine (imuran). My wife has pain in hips and joints
which neuro says comes with MG.

Her Doctor has said that she should consider applying for DLA etc and that she would support her application.
My wife is a little concerned over applying stating that although MG is always there she manages. My view is that managing itself caused her problems. I would appreciate and comments from those experienced with DLA process.

More importantly i would like comments on symptoms and medication and suggested future med azathioprine as this does worry my wife.

Regarding Azathioprine: I was really hesitant to start on this myself, having been 100% symptom free on steroids alone, but the long term, well-documented, side-effects of the pred when compared against the less well-documented potential side-effects of Azathioprine helped my decision along.

I've now been on Aza for about 9 months, have reduced my pred by 6mg in that time, and am continuing to reduce it. I think the leaflet listing potential problems with Azathioprine is pretty frightening, but then the thought of staying on higher dose steroids and suffering diabetes, cataracts and brittle bones by the time I reach middle age doesn't hold much appeal either!

Lesser of two evils?

Good luck with everything.

Azathioprine should allow the steroid dose to be greatly reduced, or even eliminated (over a considerable time).

Be aware that some patients cannot tolerate Azathioprine. In such cases the neurologist will usually suggest an alternative immuno-suppressive drug.

The doctors and drug companies have to warn you about all possible side-effects - that does not mean that you will experience them all. There are literally thousands of myasthenics around the world (including my daughter) who take azathioprine.
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Peter Finney

MGA Chairman

Regular blood tests are necessary, at first they were weekly, then monthly I now have them done every three months. I tolerate Azathiaprine very well, I was given an enzyme test while in hospital that confirmed I would be able to tolerate it.

I find it interesting that the neurologist told you that hip and joint pain do come with MG, I do have joint pains which affect my shoulder and hips and I know that this could be totally unrelated to MG, I like to keep an open mind on all things, and not attribute everthing to MG. It is interesting to be learning of all the different experiences of everyone, and of all the different opinions and answers we all get from different neurologists.

I hope that your wife can soon be feeling the benefits from medication that she decides on.