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samnikolep

New member
Joined
Dec 25, 2018
Messages
6
Reason
CALS
Diagnosis
12/2018
Country
US
State
IL
My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we should push for genetic testing for this awful disease?

Also just curious who takes vitamin d suplements due to low vitamin d? Research that I have done shows about 50% of researche supports taking it and helping and 50% show an increase in progression when taking it. His vitamin d was a 23 and that after I was making him take 6000 ui a day for 4 weeks

Anyone with chest pain mainly after laying down??? That lasts around an hour after getting up??

Erectile dysfunction? And in their 30s? He doesnt wake up with a morning wood anymore either? Also has bladder urgency and microscopic blood in urine for over a year. He gets up between midnight and 7am to pee everynight. Reminder he is 28

More emotional but emotional at correct times? When he is sad it is harder for him not to cry.

He is still mobile had symptoms since Nov17 with getting weaker but he never slowed down to let it truly affect him then May 18 it went down hill fast. Fasciculations, weakness, depression, mood swings, drop left foot, falls, off balance, memory problems, emotional, bladder urgency, vision problems, erection problems....

One more sorry dont know if this is just a fluke or what anymore but everynight for the last 2 weeks he has felt like there is something in his eye the eye changes but I can never find anything in them. 30 minutes later it goes away.

Stretching and yawning a lot throughout the day and when he stretches his limbs shake vigorously

Startles easily. By phone, door bell, dog , he told me to scratch his back and he jumps due to be being startled
Thanks for ready just some things we have been wondering.
-Sam and Reed
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,858
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
It is pretty common to offer genetic testing to young PALS even with a more complete family history. I think it is reasonable to ask. Only 70 percent of what is clearly FALS has an identifiable mutation currently

I had a low d and had corrected it before symptoms started I still take D. My neuro ( who was an author on the paper that showed the negative association) wants me to keep taking it.

He should see a urologist
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
529
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
I think his personal physician could help with a few problems, such as the erectile dysfunction and depression medication may help his well being and that in it self may rectify a lot of problems, it certainly helped me, or his neurologist may prescribe them. As far as vitamins go you can check the vitamins section of this site and see the program ALS Canada put me on and I feel great with very slow progression. Medication will also alleviate the crying, it may lead to inappropriate laughter but I find that much the crying for all involved.
Al
 
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