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sullysullivan

New member
Joined
Dec 18, 2014
Messages
2
Reason
Lost a loved one
Diagnosis
09/1998
Country
US
State
MI
City
Clinton Twp
Has anyone had ALS start in the neck area. If so, did you have any pain? My husband's family
has hereditary ALS (sod1) which he died of in 99. We are now on number 15 in the family. My son has recently come down with neck pain that after seeing several different doctors and several types of e-rat, emg, etc. cannot find anything wrong. Our next stept is our ALS doctor, which of course takes a few month to get in to see. So I would just like to know.
 
In my family neck involvement is very late and shows up as weakness ( neck falling forward chin to chest) and not pain before that. If an EMG was done and was ok that sounds like good news. Does your son know he carries the SOD1 gene defect? How old is he?
 
No, that is what we are going to see the ALS doctor for, so he can be tested. But from the 6 different doctors we have seen, no one knows what his problem may be.
 
I had neck problems and they were weakness not pain-pain is a good thing here-it means the nerves are working.
My head would lean forward just as Janie said I need a brace to keep it up.
I am so sorry your family is cursed with this monster. From what my ALS neuro said, people who come down with this in about five years time might actually have some real treatments that actually work.
 
when i was in my 20's i got missed up i broke my neck. i have pain from that time to time. for about a week now it's been getting hard for me to hold my head up right. this as been making my neck hurt more. i was thinking a neck brace my self. i don't think the pain has to do with als it's more that i can hold my head upright is making it hurt. this as been hard for me to type on here and trying to think is another thing. i don't do to good when im hurting.

boy im going to have a list when i see my dr in feb. i just hope it's not long as santas list by then.
 
>i was thinking a neck brace my self

I've been using one of those airplane pillows, really helps ...
 
i have a neck problems that also, that's why i am wondering if i have Als.
 
>Our next stept is our ALS doctor, which of course takes a few month to get in to see

why not start w/ gp?
 
how old is his mattress? his pillow?
 
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