Hi,
Thanks to you both for your replies.
Im in the Uk as you guessed. Oxford John Radcliffe is supposed to be the centre of excellence! This is where I was told I was depressed and needed CBT (cognitive behavioural therapy) to help me open my eye!
When I see a Dr that doesn't know me I no longer say that I have MG as they look at the notes from Oxford that say Im depressed and Im classed as a nutter, I just say now that I have a neurological disorder.
Im being treated with anti convulsants - Lamotrigine. In the hope that it calms down the electrical activity in my brain. However after 8 weeks on it and only 4 good days Im having doubts. Plus my hair is falling out.
I feel my consultant still thinks I have MG but feels he can't go against the centre of excellence. As he hasn't stopped me taking the mestinon, which I now take 120mg 6 times a day. (Along with all the side effects as I dont tolerate them well....would I really continue to take a medication that means I mess myself on occasions unless it did some good?)
He has finally admitted I am better on steriods, as I had no hospital admissions on them. Im just as you can imagine terribly frustrated. He was so sure before I went to Oxford that it was MG.
When I try and express my frustration I get tearful. I haven't worked in over a year and Im worse now than I ever was and no one in the medical profession seems to care. I was medically retired from my job at 35. I have told my consultant before "its ok for you, at the end of this meeting you walk away from this illness, I live with it 24-7". I dont know what more Im supposed to do?
If I go to another consultant I go with the medical notes that say I have ME ( I dont , I have a relative with it. I dont have the symptoms- no swollen lymph nodes etc the relative has had the condition 18 years so I know the signs and symptoms pretty well) or depression or heaven forbid conversion syndrome. (mentally I have never felt better and haven't been taking anti depressants since July 2008). I get days when I feel down but I think you would have to be a robot not to in this situation.
I just feel that Im going to go on for years not knowing whats wrong......although all the symptoms I have point to MG.Along with Ptosis that fluctuates, I have problems with my voice sounds gravelly, or like I have a cold or nothing comes out at all. I choke on my own saliva, food and drink. I struggle to get out of my chair, roll over unassisted in bed, climb stairs, walk. Anything really that is physical. So its not like this isn't affecting me!
Also has anyone noticed with their ptosis, if they can see their pupil does it roll out or in towards the nose? Mine moves out towards my ear. This makes my vision awful. I can see how people can fake ptosis but how do I fake a pupil drift when your eyes work together?
Sorry I have done it again....droned on. Sorry all the toys are out of the pram now!!
Thanks again
Rach
