Hi there
I was diagnosed in August this year and have experienced a steady decline until the last 2-3 weeks when I’ve deteriorated quite rapidly. I now can’t walk at all unaided (& not far with a frame/rollator), my arms are weak, especially my left arm which has very little strength (also think my left hand is starting to get weak despite both hands/fingers being so far unaffected), I’m losing my (normally very healthy!) appetite as I get so tired chewing and swallowing- and my speech has pretty much completely gone now. I’m worried that I have Bulbar deterioration and that this means my remaining time might be very limited. Would these symptoms suggest that?
Secondly, I have - & always have had - persistent fasciculations all around my body - there’s rarely a time when at least 2 or 3 parts of my body aren’t twitching. I also get frequent cramps in my legs, mostly in the night & morning when I move after sleeping. Again, this is something I’ve had for a few months now though it’s becoming more frequent. It’s not overly painful so ive never sought medical advice for this , nor for the fasciculations. Do you think I should?
Thanks
Sarah
I was diagnosed in August this year and have experienced a steady decline until the last 2-3 weeks when I’ve deteriorated quite rapidly. I now can’t walk at all unaided (& not far with a frame/rollator), my arms are weak, especially my left arm which has very little strength (also think my left hand is starting to get weak despite both hands/fingers being so far unaffected), I’m losing my (normally very healthy!) appetite as I get so tired chewing and swallowing- and my speech has pretty much completely gone now. I’m worried that I have Bulbar deterioration and that this means my remaining time might be very limited. Would these symptoms suggest that?
Secondly, I have - & always have had - persistent fasciculations all around my body - there’s rarely a time when at least 2 or 3 parts of my body aren’t twitching. I also get frequent cramps in my legs, mostly in the night & morning when I move after sleeping. Again, this is something I’ve had for a few months now though it’s becoming more frequent. It’s not overly painful so ive never sought medical advice for this , nor for the fasciculations. Do you think I should?
Thanks
Sarah
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