corwin
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Mod note to future readers: Corwin's diagnosis was reversed and he was told not ALS. Please see his post on 2/16/2017
Yesterday I went to als clinic in Istanbul, Tyrkey and was diagnosed after 5 minutes exam and 2 hours EMG with bulbar Als. Doc thinks atypical because of the sensory symptoms but is 99 percent shure it is.
Somehow I feel relief.... Last 2 years eveeybody is teling me it is in my head but to hear it from mnd doc and to have it written......
I have a lot of issuesh - whole body twitching, tongue atrophy with fasciculation, shoulder weaknes bilateral, leg bilateral weakness, swallowing difficulties, ptosis, eyelid weakness, blurry vision and shortness of breath.
The mnd doc wants to test me for kenedy disease because of my gynecomastya and sensory issues + tremmor, but because i have brisk reflexes he told me the chanses are really really low...
The most painfull is that my 2 years daughter will not remember me...
I have achieved so much in so short life- in business and education, but the most importhant - to live happy and long with you familly... that i don't............
I haven't told to my life and familly I just don't know what to do..... I don't want to be potapo on wheel chair( sorry PALS) or to be burgain to my life and familly...
Don't know what to do... really...
I hope after the shock to have one slow progression but.....how knows....
So 32 years old with bulbar als....
Yesterday I went to als clinic in Istanbul, Tyrkey and was diagnosed after 5 minutes exam and 2 hours EMG with bulbar Als. Doc thinks atypical because of the sensory symptoms but is 99 percent shure it is.
Somehow I feel relief.... Last 2 years eveeybody is teling me it is in my head but to hear it from mnd doc and to have it written......
I have a lot of issuesh - whole body twitching, tongue atrophy with fasciculation, shoulder weaknes bilateral, leg bilateral weakness, swallowing difficulties, ptosis, eyelid weakness, blurry vision and shortness of breath.
The mnd doc wants to test me for kenedy disease because of my gynecomastya and sensory issues + tremmor, but because i have brisk reflexes he told me the chanses are really really low...
The most painfull is that my 2 years daughter will not remember me...
I have achieved so much in so short life- in business and education, but the most importhant - to live happy and long with you familly... that i don't............
I haven't told to my life and familly I just don't know what to do..... I don't want to be potapo on wheel chair( sorry PALS) or to be burgain to my life and familly...
Don't know what to do... really...
I hope after the shock to have one slow progression but.....how knows....
So 32 years old with bulbar als....
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