Recent content by Anjum nazir

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...

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...

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...

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...

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

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

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...

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...

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

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...

Oh...I have been waiting for oral edaravone since long...I had my infusions for 6 months and it helped me a lot.... I just want to know whether oral and infused forms have the same efficacy... As per research edaravone retards progression by 33 percent...only problem is infusion method and it...

N what about people like me who are fals but do not know the exact gene involved ...what should we people do even without hope for future therapies

It is third year of my diagnosis as Pals...I did my clinical exome study with known genes for all neurological diseases ... unfortunately it came negative....I have a relentless disease which is lower motor neurone predominant.. I do not know the gene involved...please guide how can I get to...

telbivudine has been proposed as new treatment for Als and so has been dexamethasone... any updates for trying it...

Yes ...it is too promising.....but what about current patients.....can we get cuatsm from market...and try it...