purpledido
1 post
Aug 27, 2008
11:23 AM
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I have lived with M.G. all my life. I am 52, My mother realised there was something wrong when I was about 5 years old but it took numerous different doctors and wrong diagnosis untill at 13 she was told I had M.G. I have lived happily knowing my limitations for all these years. I have had a couple of 'crisis' that have lasted a week or two then I have sprung back and carried on. In march this year I suddenly realised I was having problems and going down hill, I reached rock bottom early April. The problem is my body seems unable to spring back from this crisis. I feel like I have been unplugged, constantly tired and constantly dragging my body around like a bag of lead. My specialist has refered me to the John Radcliff as he is unsure what has happened or what has gone wrong. I am waiting on the appointment. I have never been this low,it has been 6 months now.Has anyone else been affected this badly for so long?
Last Edited on 27-Aug-2008 11:25 AM
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mrloz
54 posts
Aug 29, 2008
1:59 AM
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Sorry to hear of this crisis. I guess only you can tell, but is it possible that it is something else altogether? Have you tried increasing your meds? Does the mestinon or pred make any difference? If meds do not help at all then it may be some sort of virus; a friend of mine was afflicted similarly for the best part of a year; nothing helped but then just as suddenly she sprang back into action and has been fine ever since. Lets hope it is something like that. The new JR is a fantastic place, staffed by great people so I'm sure they will get to the bottom of it for you. Good luck!
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Laurence in London
Last Edited on 29-Aug-2008 2:00 AM
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purpledido
3 posts
Aug 29, 2008
4:02 AM
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Hi Laurence, I am not on any Steroids, I have always seemed to manage quite well and I am scared of taking them. I am on Mestinon a huge dose but it feels like its not working at the moment, no improvement after taking it. I was on azathioprine up untill 3 years ago when I had a cancer scare, a lump in my boob, I was then told this could be one of the side affects of this drug, I did'nt know this and got scared and stopped taking this. Although I had been on this a few years I never appeared to be better or worse, and when I stopped taking it there was no difference in myself. 12 years ago the muscles started to waste in the back of the tops of my arms, also my fingers close up on me like a claw when I write, sew anything really for more than a minute or two. My hands just seem to collapse. The specialists have never really told me what was going wrong, I do not think they really know, but I have adapted and managed. I had not thought of this being some sort of virus, thats interesting. I just hope something can be done, I have always managed my condition by putting it to the back of my mind and getting on with life. Thanks for your thoughts
Dido in Surrey
Last Edited on 29-Aug-2008 4:25 AM
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