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    Familial pma

    My mother could take her food by herself for 15 years... For rest of the two years of her life she could not use her hands or body and was completely paralysed.. But her grip was strong. This leaves me perplexed.. She did die of pneumonia and lived for 17 years bed bound. She was diagnosed...
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    Familial pma

    What is prognosis of pma. My mother survived with disease for 17 years. Initally her disease was lower motor neuron specific. She had wasting hyporeflexia and weakness of lower limbs. She was confined to bed for 17 years before dying in 2008 to pneumonia and respiratory illness. Now me and my...
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    ALS C9orf72

    I disbmy clinical exome study for mnd genes in 2018..it came inconclusive...I sent the raw data to kings College London and they told me they have not tested repeat sequence genes like c9.. actually they do not have technology here to trace for such genes . I have a strong family history of the...
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    Floating Stools for anyone else?

    This is for me as well...even before onset I experienced floating stools and I am still experiencing it...there is some co relation with the disease... Does anybody know the reason...
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    sodium phenylbutyrate

    No body has been successful in acquiring it and therefore we do not know how it works...hope somebody shares the experience....
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    Crystal’s thread

    Can u please list the equipment s used by the pals...so that it can be confirmed whether we have all...
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    Deanna protocol

    There has been a study in ALD NEWS TODAY regarding efficiency about this protocol...what is this protocol medicine wise and can it be really of some help...can pals try it...
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    Astro Rx

    I want to know how successful is this infusion ....and how can patients avail it ... astroRx is an infusion of astrocytes which is shown to have retarded progression by 50 percent... We are a group of around 100 patients from India...please confirm the efficacy of the medicine and whether there...
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    ALS Signal Clinical Research Dashboard

    Such a helpful thing...may God help you for helping the pals...
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    Oral Radicava Trial

    I am a witness to the fact that the only drug which made me feel good and delayed progression as kept on measuring my thighs and calf was radicava... unfortunately I am from Kashmir India and here neuros feel it is to be administered for six months only... Also my blood vessels are no longer...
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