Help ALS runs in my family

[swimmer0302]

So couple questions I'm 28 my grandmother died from ALS when I was 13 she was 62 when she passed. I know that her uncle and his 2 kids also passed away from ALS (I never met them). My grandmother had 3 kids .. My dad and my uncle and aunt none of them or their kids have been diagnosed with ALS. It has alway been in the back of my mind that ALS could be a problem for me or my kids one day . I have asked my dad to get tested for the gene so we will know if me or my 2 sisters are at risk but he refuses simply because he thinks it will do no good to know do yall agree with this ? Also about 2 weeks ago i was trying to open a pack of gummies for my son and my hand was so weak I couldn't and I had a flash back to helping my grandma button her shirt because her hands wouldn't allow her to with ALS . I was concerned and brushed it off but a week later I started having cramps in my toes and calves whilst laying in bed so I thought let me get some v8 juice it's just low vitamins . It didn't do much I still feel like my right arm is weak and numb and tingling it also started having twitches and my left arm is fine it so weird. So of course I googled my syptoms and when it came up ALS I started crying and called my dad . I made an appointment with my doctor and he didn't seem concerned about ALS because he thinks I'm too young but sent me for a blood test I'm still waiting on those results in the mean time I'm scared I can't sleep and I keep crying so I'm not here for a diagnosis but if anyone can point me in the right direction or even tell me about your signs of ALS I would greatly appreciate it !

 

[Nikki J]

Hi it does not seem like ALS and your doctor was not concerned
Please read the stickies for this section and also the one for the FALS section. The latter explains about testing

 

[BillH]

Hello. So sorry to hear you are in a family with ALS. I am also in an ALS family. We can trace it back to great grandmother on my Mom's side. It has been very prevalent in our family tree so some of my siblings and cousins have chosen to be tested. Two have tested positive and three have tested negative. Two others have been tested for research studies but have elected not to know their results.

One of my sisters tested, negative btw, and the reason she gave was so her kids would know for sure... which is very cool when your result is negative. I wonder if they would think the same if they knew they were positive at age 28 or 30-ish? For myself, I have been just fine not knowing for sure so I have not tested yet. We also have family arthritis, allergies, and personal histories of "dubious adventures" that might be more common explanations for a lot of the symptoms we develop as we get older. I look to those things before I think ALS.

For many folks, knowing they are positive can be maddening because they focus so strongly on every tiny twitch and feeling. As you already know, just knowing you are in an ALS family will already make you second guess everything you feel... that's no way to live. Testing at a young age might not be the best strategy.

28 is pretty young... in our family I think the youngest onset was mid-40's but most are late 50's to mid 60's. My Mom was past 70, as is one of my uncles. So I agree with Nikki and would tend not to think ALS yet in your case. God bless!

 

[Atsugi]

"just knowing you are in an ALS family will already make you second guess everything you feel... that's no way to live"
Thanks for the insight, Bill.

 

[swimmer0302]

Hey thanks for the input . I got my blood tests back and everything was normal had a cat scan done and chest scan everything is fine . I'm really praying that it's all in my mind but the ER doctor scared me to death he told me because the weakness and numbness was moving from arm to arm that it could be a sign of ALS so now I have an appointment with a neurologist but couldn't get an appointment until November .... Meanwhile I'm on anxiety meds because I had a panick attack when the ER doctor told me that ! I feel like a lot of doctors don't know much about ALS is what he said true? Also if it's determined not to be ALS I have decided not to get tested I don't think I can live with a positive result . Thanks yall !

 

[Atsugi]

"weakness and numbness was moving from arm to arm"
That does not sound like ALS at all.

"a lot of doctors don't know much about ALS"
That's true. It's a rare disease.

"I have decided not to get tested"
A lot of people agree.

Good luck, Swimmer.