Michael Cosgray
Forum Replies Created
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Amanda,
I have not been able to enroll in any pfals trials to date, thanks to my asymptomatic condition. It’s all good. I remain hopeful that a trial will come along before my battle commences that gives me more time to enjoy a high quality lifestyle. C9orf72 gene mutation research is just starting to get 🔥.
I haven not made an appointment with the clinic to get poked and prodded yet. It’s golf season. News of my genetic positive result is still weeks old. I made a promise to those that are close to me to see a Neurologist before my birthday in September. I admit, I am not looking forward to it.
Incidentally, when the Mayo clinic called this week to reject me, they mentioned a FTD study that might put me in front of one sooner.
You paint a pretty clear portrait of what my first visit will entail. Thanks for spelling it out.
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I considered genetic testing for about three years before finally deciding to move forward. ALS isn’t a stranger in my family. The 50/50 coin flip weighed on me more and more the older I got. I found the counseling session refreshing. There is no more mystery. C9orf72 is my mutation. I have plenty to do!