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  1. Nikki J

    Importance of reading to your children

    The Million Word Gap Parents who take time to read aloud to their children are doing them a huge favor. Not only is it a memorable bonding activity, but it's also a way to jump-start a child's education and put them on the fast track to literacy. Many parents and caretakers know this...
  2. C

    Muscle fatigue/weakness, fasciculations

    I want to share my story. I have seen many doctors in many specialties (including many neurologists), and nobody can help me. I'd like to ask (1) if this sounds like ALS, (2) if this sounds like another motor neuron disease of any kind, or (3) what else it could be and where else I might look...
  3. D

    Delsym?

    My understanding of Neudexta is that the dextromethorphan is what helps PBA. If dextromethorphan is the active ingredient in Neudexta, and quinidine is only there to slow the metabolism of the DM, shouldn't any sustained release form of DM be helpful? Quinidine interacts with other meds that can...
  4. S

    EMG Help

    Hello All... 37M Aussie Pilot Here... I had an emg in March last year due to muscle twitching and was given the all clear. Last year they tested the following R Deltoid R Triceps R First D Inteross R Tib Anterior R Gastrocn (MED) R Vast Medialis L Tib Anterior L Rect Abdominis L Trapezius...
  5. S

    We are stuck and need advice

    I have had 2 accidents now and I just dont understand how it's not ALS related. Both now I have been in the bathroom on time but as soon as I see the toilet I cant hold it anymore and it all comes out. Is this normal? Plus my hair is so greasy and my hair on my head and eyelashes are getting...
  6. Doglady

    Study of Urate Elevation in ALS -phase II

    I ‘ve been sent information from my clinic on participation in a study using inosine to increase urate levels and see if it’s tolerated and benefits PALS. If I qualify I think I would be willing to participate. Any one with experience or knowledge have any comments???
  7. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
  8. S

    Genetic testing??

    My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
  9. T

    Worrisome symptoms - should I be concerned?

    Hi, first of all - thanks in advance for spending some of your precious your time reading my long story. I'm 25 and last 3 months of my life was the worst (so far) , fear-ridden time I have ever experienced. Everything started on the 1st of October with a constant, mild headache with painful...
  10. KimT

    Multiple Medical Issues

    I wasn't sure if I would post this at all. After deciding I had no idea where to post it but, for me, it feels like a rant/complaint so here it is. Since my diagnosis I've always believed that I should take good care of my general health, get some good sun each day possible, get some light...
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