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loralie

Member
Joined
Nov 8, 2008
Messages
19
Reason
CALS
Diagnosis
08/2008
Country
US
State
NY
City
finger lakes region
My husband was diagnosed with ALS at the end of August, 2008. Since then, I've taken comfort from your posts ... your information, your honesty and your humor. I guess we've both just been lurking up until now, happy to know you are out there. In the past few months, I have noticed increasing fasiculations (and muscle cramping) on myself ... and yesterday i fiinally looked at my foot (where i feel regular fasciculations) and it looks just like the fasiculations I see and feel on my husband! It's not so much that I'm worried that I have ALS too (although the scary thought has occurred to me) but that I am now wondering if there is some environmental link to this ...? Maybe a key to what is ailing him? (In addition to ALS he was diagnosed with subtle seizures too ... some mental changes ... not a normal thing with ALS ... taken care of with Kepra). I've also wondered it other spouses of people with ALS have developed fasiculatioins ... it almost feels like it is our bodies talking to each other.
Loralie
 
fasciculations happen to lots to people and often they go unnoticed. i've only started paying attention to my own little twitches and tweaks since i am now aware of the ones i see and feel on my mum. maybe it is heightened awareness?

god bless.
 
Hello. Following my partner's diagnosis (Nov 08) I have experienced twitches on my arms, legs and face. I know those are related to shock of diagnosis, stress and worry, rather than being a symptom of ALS. They are exactly the same as twitches I had during previous times of upheaval.
 
Even my wife gets them. She started noticing them after my Dx. During my visit to neurology clinic at UW in Jan, she asked the doc (neurologist) about it. He told her not to worry as it's very common and can happen because of stress. So don't worry too much about it.
 
My husband was diagnosed with ALS at the end of August, 2008. Since then, I've taken comfort from your posts ... your information, your honesty and your humor. I guess we've both just been lurking up until now, happy to know you are out there. In the past few months, I have noticed increasing fasiculations (and muscle cramping) on myself ... and yesterday i fiinally looked at my foot (where i feel regular fasciculations) and it looks just like the fasiculations I see and feel on my husband! It's not so much that I'm worried that I have ALS too (although the scary thought has occurred to me) but that I am now wondering if there is some environmental link to this ...? Maybe a key to what is ailing him? (In addition to ALS he was diagnosed with subtle seizures too ... some mental changes ... not a normal thing with ALS ... taken care of with Kepra). I've also wondered it other spouses of people with ALS have developed fasiculatioins ... it almost feels like it is our bodies talking to each other.
Loralie

this concern over environmental cause and effect of ALS has been the subject of medical debate and investigation for years, but no definitive correlation has been established. exposier to organophosphates can replicate the symptoms of ALS, but with treatment can be reversed. from all the research i've done, it is believed that ALS is an autoimmune disorder triggered by a mutant gene, or visa versa.
 
Thanks so much to all of you who answered.
It is actually exactly what I hoped (and expected) to hear ... I understand why anyone who has a loved one with ALS would be more attuned to their own twitches, etc. .... however I swear I never had them like i do now. But it is a relief to know they could also come from worry/stress. My body has never manifested stress this way before, but then again, this is all new territory ... a whole different kind of worry. (I think I'll still do what your wife did, and ask the next time we are at the ALS clinic.
Now I just need to get my husband onto this forum. What a great place to have questions answered. Thanks again.
 
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