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Old 11-08-2009, 12:31 AM
xanadu xanadu is offline
Junior Member
 
Join Date: Nov 2009
Posts: 76
10 yr Member
xanadu xanadu is offline
Junior Member
 
Join Date: Nov 2009
Posts: 76
10 yr Member
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Thanks Annie and Nicky, I am sorry if I appeared to rant a little but I am getting so tired of being tired with no help. I have had both types of blood tests done twice ( negative ) an EMG ( negative) and a Tensilon Test done ( negative but I heard the neuro say he had left some in the line so am unsure what he did). I take cortisone for another autoimmune condition and that Dr now tells me that it will affect the MG tests. I have not had the single fibre test done. I have had to wait 18 months for that and now I wonder if it will be accurate anyway after what my last Specialist said.

I am in Australia and this week has suddenly turned hot. A week of 100F+ and I simply cannot breath unless I sit in front of an air conditioner. I do not have asthma ( has been tested ) but significant breathing weakness.

I have severe hyponeas during REM sleep only. CPAP was trialled and made me worse.It choked me.

I have read how thymomas can be hidden on a CT scan and that scares me too. It has been 18 months since my CT was done and no one seems to be caring or rechecking that.

When at my worst last year I had eye lid closing, facial 'stiffness', slurred speech and problems chewing and swallowing food. I also could not cut up my own meal. My arms and legs went weak as well and I had one or two major falls. During the last few months this seemed to improve a little but with this sudden heat I find I cannot function again. I see my Neuro next month for his 6 monthly check. I am so scared he will just say 'come back in 6 months' again.

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