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grandmommyk

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Joined
Jan 30, 2011
Messages
121
Reason
CALS
Diagnosis
07/1995
Country
US
State
TX
City
Spring
Hy husband has been fighting ALS for years. Now his sister's husband may also have it. It started with weakness on his right side. He has been going through all the testing for other things that it could be. He started having flashes of light from his eyes about the same time that he noted the weakness. I had never heard of that with ALS. Have others experienced it?
Now the specialist feel they have ruled everything out other than something attacking the motor neurons from an outside source or an MND. ALS was mentioned quit a bit. They did a lot more blood work, started him on a list of vitamins and antioxidants and are scheduling a sleep study. He is supposed to go for final results in about 4 weeks. Does anyone know what the outside source could be that would attack motor neurons?
Thanks a bunch. Any help is appreciated.
 
So sorry about all this! I read some of your old posts. How is your husband doing?

Other things that might mimic ALS ? Virus or heavy metal poisoning maybe? Although the metals should show up in blood tests.

It seems incredible that one family should have 2 cases of SALS but similar in my family. My aunt died of FALS. Her husband's cousin died of SALS. Life is so not fair!
 
I see flashes of light, squirming lines in my vision and i 'see noises' if that makes sense. but noticed the seeing lights around the time my diffuse fasciculations started. Its been a real contributor to my worries. i also experience a ratcheting of my muscles when i lower them from a raised position, but the neurologists say its not classical "cogwheeling rigidity". any similarities? i literally get fascics everywhere including my forehead. Not diagnosed with anything as of yet. going to see a movement disorder specialist next week.
 
Thank you both for your replies. My husband continues to do well. There is progression, but it is very sow for ALS.
As for my brother-in-law, the only symptoms I am aware of is weakness in his right side mainly in his leg but also in his arm, fatigue and the flashes of light. He says it's like a star burst effect.
Thank you,
Karen
AKA Grandmommyk
 
Whatever i have, its been slowly progressing as well, but weakness has been noted on my right side. My eye flashes are like starbursts as well, i also see "rainbows of light" if this makes sense. Did your husband ever take any muscle building supplements? Like for working out at the gym? Im trying to find a common denominator.
 
My husband was diagnosed almost 18 years ago with ALS. His progression has been very slow but was too fast in the beginning for PLS. Also he had a muscle biopsy that showed muscle breakdown.

It is my brother-in-law now who has been diagnosed with a motor Neuron problem probably ALS. He is not a blood relative of my husband's. He is the one whose weakness is on his right side and started having star burst at about the same time as the weakness. My husbands started on his left side, and he has never experienced any affects on his vision.

I know that both my brother-in-law and sister in law had gym memberships for awhile, but I have no idea if he took anything. He is 55 years old.

Sorry I couldn't offer more help.

Grandmommyk
 
Please consider taking the time to fill out the ALS registry run by the CDC. It's the only way we will ever get to the bottom of this miserable mystery! Thanks
Hollister
 
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