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Hi Skyehy

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State
OK
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Tulsa
Two uncles on my mothers side, her 2 brothers- died of als. I started getting symptoms in my 20's. I thought it was something else though since I'm still here 13 years later. Just recently found out about an early onset type of als with slow progression. Neuros have ruled everything else out and haven't given me an answer.

The als specialist who treated my uncle in San Antonio would like to see me. When do I make the leap and go to another state to see this doctor? I guess I'm just "neuro weary" since the others just looked at me blankly and took notes. Maybe I'm just scared to make the appt.

Went from a slight limp in 1999. to a cane, to a walker, to a scooter in 2005. Can't walk. Can't stand w/o bilateral support because my balance is so bad. I'm only considering seeing a specialist because my arms/hands are getting weaker now with use and I'm choking a lot. There's a hesitancy, if you know what I mean, when I drink, before I can swallow. I'm too young for this. :?:
 
Yes You are too young for all this and its just not fair, but unfortunately, life is not always fair.
I can imagine how you have become neuro weary...I had that same condition but, you need to find answers.
Going to the Doctor who has dealth with your uncle, sounds like a proactive step forward. Take control of this thing and go. He will have an open mind having dealt with a family member. You are too young to be suffering this way and need answers. At least you will get some idea of where your future is heading, with a diagnosis of some kind. Although that may not turn out to be a future that you had hoped for, at least it can be a future that yoiu can gain a little control over. Plan ahead etc.
It sounds like whatever it is, its very slowly progressing, which is one positive aspect, to hang on to.
I wish you well
Aly
 
ALS does not discriminate by age or any other means. I would tell you that it is never too early to see an ALS specialist if you have a good reason to see one and you obviously do.

Remember there is life after diagnosis and you have already conqured a difficult concept, adjusting to new normals.

Good luck, as our departed friend BarryG always said "Remember I am pulling for you...we are all in this together"
 
Thank you for the responses. Sorry I posted twice. Still trying to learn to get around this site. What difference would it really make learning the truth? And is digestive difficulties a sign that my weakness is moving up my trunk?
 
What difference would it really make learning the truth?

Well, that of course depends. If it is something else besides ALS it may be treatable. If it is ALS, the you could have other resources available such as social security, ALS Association loan closet, support groups, etc.
 
Its important to get a diagnosis so you can get what you need. disability medicare.
Equipment medications you may need if you progress .
ALS clinics have social workers who can help you join als and mda association .PT OT. Speech and swallowing respiratory therapy will be available there and will follow your progression .
Its very important to see an als specialist who can make a proper diagnosis
God bless
 
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