Joan
Forum Replies Created
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I’d love it but have c9 defect
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Too expensive for me but great design
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I still go to church most every day
we play cards with friends or see movies or I let them drink and eat it doesn’t bother me to not be able to participate as long as I can be part of the conversation even if it’s with my phone! We go to peoples houses or they come here and just hang and talk. We’ve gone to the botanic gardens, me in a wheelchair, and the zoo
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The new Healy regimen F
with targeting tfp43
joan
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I can’t hold my head up either
the soft collars work marginally
I have a hard class but rarely use it
the best one for myself o found on Amazon called comfy med. Comes in sizes and not expensive
Joan
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I have it but my cytokinetics drug raised my liver and can’t start the relyvrio until liver is normal
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I have it but my cytokinetics drug raised my liver and can’t start the relyvrio until liver is normal
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Please se a neuromuscular doctor and no one else
It’s important to see the correct specialist and it should not take a year. It is a diagnosis of exclusion -
I suggest a second opinion and if you have the means I would go to Mass general . Fasciculations are a hall mark of ALS. no other disease causes them
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You need to see a pulmonologist ( lung doctor) specializing in ALS
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Thank you
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I would not wait but see an ALS expert and they are hard to find
She needs to have everything else excluded but then should consider treatment now and not wait
You never know how long you have to livei had to go to another state to see the correct doctors
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I would not wait but see an ALS expert and they are hard to find
She needs to have everything else excluded but then should consider treatment now and not wait
You never know howling you have to live -
I had so much saliva with just one pill. I quit
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I have the C9 defect. what study are you in and through whom or where?
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Jim
the amx0035 is in a phase 3 trial Phoenix and is applying for expanded access also which you could qualify for potentially