bill-osullivan
Forum Replies Created
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Hello, you are not alone with your concern. My symptoms started 4 years ago and diagnosed in 2021. I have the same issue described with runny drippy nose that I notice after or during activity such as walking, eating and pretty much any activity. I do a lot of sniffling and use many tissues. I also discussed at my ALS clinic and they do not think it is ALS related since I don’t have other mucus issues.
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Hello Jerry, Our family has the CHCHD10 variant c.44G>T (p.Arg15Leu). Â We lost our mother and 4 of her brothers and sisters to ALS. Â I have 8 brothers and sisters some have tested for the defective gene and are positive including my son & daughter. Â I am the oldest at 65 and the only one currently with ALS degradation. Agree it is time to find a cure or slow down the progression for the next generation.
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I found the article you shared about FDA rushing approval of AMX0035 very interesting. Â I Read the comments that Bryan Trayor of NIH voted to approve and was interested in the company talking about removing from market is history does not support slowing down progression.
Dr Trayor and his team were interested in our family gene mutation and they are working with us collecting biopsy and blood from my children and siblings who tested positive for our family defective gene. I spent an entire day with him and was impressed with his confidence in future treatments to slow ALS. Â I am taking riluzole and Radicava ORS with no side effects, I have no hesitation adding AMX0035. All medications that have potential to slow progression are welcome.
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Hello, I am new to the forum however not new to ALS. Unfortunately our family has the familia version of ALS so I know the progression and outcome only too well. First symptoms 3 years ago when diagnosed doctor put me on Riluzole and daily anti-oxidant cocktail of several over the counter items. Not sure if this is something others are doing. I can share the list if needed. Â I started Radicava ORS on Wed two days ago, so far so good. Watching for anticipated FDA approval of AMX0035 a plan to add that to my drug list.
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I mix with tap water stir well drink as fast as I can. Then eat 2 or 3 hershey kisses. The chocolate cleans most of the after taste. I wipe my lips to remove the taste then brush my teeth. No real issues and no after taste
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No need to wait for VA if you have medicare, the latest booster includes protection against latest variants including omicron is available now. We got ours at CVS last week other drug chains also have it available.
PFIZER 12YR+ COVID-19 BIVALENT