Someone...PLEASE save my sanity! Please.

[chrismaya]

Hi, Everyone, and thank you for taking the time to read my post.

My 78 year old mother has just been diagnosed with ALS. I think the first thing she noticed was a weakness of her right arm. That was over a year ago. She also has dementia. The neuro didn't know whether the dementia was connected with the ALS, but I'm almost glad she has it, because she is kind of clueless as to what is going on.

In the past 3 months, she has declined rapidly before my very eyes. She is using a walker, she's bent @ a 90 degree angle. She is having trouble swallowing. Slurring. The whole 9 yards.

Here's where I come in. I am soon to be 44 and the mother of 4 children. Of course once my mom got her diagnosed, I went on line to get more info.

Well, one of the BIGGIE signs seems to be muscle twitches.

Okay........so I have these, like, super bad. If I lie in bed, I can have AT LEAST 14 an hour. They jump around. My thigh, my bicep, my calf, sometimes I swear I feel it in my stomach. It is like these twitches just bounce and bounce around.

I have no other symptoms..........I don't think...........but I did notice when doing Yoga that my right side isn't as strong as my left, and I remember thinking, "Hmmmm, that's weird. I'm righty. I would think my right side would be stronger." But this was before my mother's diagnosed, so I shrugged it off.

Okay, thanks for reading this long.

My question is: IS THIS HOW THE TWITCHING PRESENTS ITSELF? Do I have the classic "twitching sympoms" or would they present differently?

I read on line that 10% of ALS has a familial connection, and I also read that only ONE parent has to pass on the "bad gene."

If someone can please answer me. I'm walking around in tears all day. It's all so much to handle......the kids.......my mom........and worrying about me!

 

[Mary Helen Barr]

I lost my father to ALS in December, and he had it for 7+ years. I get random twitching, but I really don't feel like I have a problem. I don't feel like it's a problem, because I might have some all day, and then not again for weeks. Having a parent with such a hideous disease does tend to make you think you might be next. Every time I drop something or bang into something I can't help thinking "oh, no, maybe I'm getting it" but I really don't think so. I'm sorry about the diagnosis of your mother.

 

[wright]

Hello Chrismaya

You're not the first ALS caregiver that has thought he/she was developing ALS. You are certainly going to become hypervigilant when it comes to ALS symptoms when you know what they are. However, it sounds as if your only symptom so far is twitching and you say you get 14 twitches per hour that are scattered through-out your body. Fourteen twitches per hour is not "really bad" twitching (as you put it). Twitching can happen for soooooooo many reasons, most of which are completely benign. I think that you're going to drive yourself crazy so the best thing for you to do is go to a neuro to get some peace of mind. Take care and ask more questions if you feel the need.

 

[brooksea]

Very sorry your mother has been diagnosed with ALS. I'm sure this has been a shock to you and your family.

You may possibly be stressing yourself out! Everyone here that cares for a PALS, has been there.

The twitching associated with ALS (in my own personal observation), begins in one local area and then gradually moves on to neighboring areas. It has not been random in my husband. The areas affected with atrophy are the areas where twitching began first. When I see a new area with twitching, then I know atrophy will be following down the road.

I am no doc, so you may want to see a real one to alleviate your concerns.

Good luck!

 

[crystalkk]

Stress, anxiety, lack of sleep are just a few things that can cause twitches.... I am not a dr. put with everything going on I'm sure you have all 3 of those..... Like everyone said go to the nuero for your sanity.

 

[momtoandi]

I could have posted this. My mom died last year of ALS. (She used to post here...some of you may remember her). I notice every muscle twitch lately--like you I have random twitches all over....mostly when I am resting. Of course, I am the exhausted mom of a two year old and a four month old, and drink caffiene all day to keep moving....and I know stress and caffiene can both cause twitches. But after seeing what my mom went through I am terrified that every twitch is ALS. I am guessing that this will always be in the back of my mind, and the fear will never quite go away. I just pray every day to see my babies grow up.....

 

[chrismaya]

Thank you so much MomtoAndi. Only someone who has a "first-degree" relative w/ALS can understand the fear that "we're next."

 

[momtoandi]

Thank you so much MomtoAndi. Only someone who has a "first-degree" relative w/ALS can understand the fear that "we're next."

I completely get it. When I said to my dad (who was an amazing caregiver to my mom) that I worried about this he said "I don't"...and my response was "No--because you do not share a gene pool !" Even he did not understand the fear....

I wish I had something to say to make it go away, but I do take solace in the fact that no one else in her family (and everyone lived to be quite old) ever had any symptoms, nor do any of her siblings or my older siblings. But every time someone tells me how much I am like my mom a little piece of me trembles....

Many hugs to you....