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Hi Skyehy

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Tried to post before and it went to moderation for some reason. I sound further along in symptoms than some of you and I haven't even been officially diagnosed yet.

2 uncles on my mother's side, her 2 brothers died of ALS. I started having symptoms in my early 20's though I didn't realize it. Only recently heard of an early onset form of ALS. Started with a limp on my right side, weak ankles, foot drop. Went from a cane to a walker to a scooter in 2005. Really bad leg spasms. Now I can't walk and can only stand a short time with bilateral support because of my balance. What balance? The progression is so slow. Grateful for that.

I only recently thought of seeing a specialist because I noticed my arms are getting fatigued with use. No neurologist has been able (or willing?) to diagnose me. I've been on a steady decline for 13 years now. I'm so tired all the time. But there's no noticeable atrophy. I don't know what to expect next.

Now the ALS specialist who treated my uncle in San Antonio wants me to make an appointment. When do I need to take the leap? How do I know it's appropriate to go to a different state to see this doctor? Or maybe I'm just scared to make the appointment. :?:
 
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