Quote:
Originally Posted by rach73
I have had all the tests, around 4 or 5 SFEMGS, numerous blood tests and two tensilon tests. On the first tensilon test I responded for a few minutes but apparently that's not enough to be positive.
On the second test I responded to the atropine and not the tensilon.
I have always been positive on the icepack test which proves that there is an issue with the nerve junction - but the drs here dont like using that test.
No one has ever been able to tell me why I will respond to mestinon when I have ptosis, other than to say the response is all in my head.
The world leading expert promised me plex if all the tests came back negative as that would for once and for all tell them if I had MG. But I was denied this and dropped by him and my local neuro. All believe that I am just nuts or stressed and enjoy living my life confined to my bed 18 hours a day and using a wheel chair!
If I am doing this for attention- where is the attention? I see no one for months on end other than my husband. My only contact with the outside world is the Internet.
And why am I developing problems such as gastroparesis, an autonomic nervous system problems as in post prandial hypotension, POTS and not being able to regulate my body temperature?
This nightmare never ends. I wish you all the luck in the world Lindie with getting a diagnosis.
Rach
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Rach, I feel so bad that you are not getting any help. I know that my symptoms are not as bad as yours, but I feel for you. I am getting tired and depressed from not having energy to spend time with friends, I am turning more and more to the internet for friendship...I can't imagine anyone pretending to have any of these symptoms. You alone know what you feel and not any of the "experts", you are always right about your experiences and you are not crazy... I don't understand why the doctors won't offer you some treatment even if they won't give you a diagnosis! I hope you find the help you need.
Lindie, I hope you get a diagnosis soon. Aging causing ptosis! Sounds ridiculous! My MG started with eyelid ptosis, but quickly progressed to include more symptoms...I often get eyelid ptosis even while taking Mestinon, it seems to be one of my first symptoms of weakness.