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tofurific

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Looking for general advice. Here is my history:

My maternal grandmother had dementia/Alzheimer's (that's all I really know) and died in her 80s.

My mother had ALS. Onset was in her mid to late 40s and she died at 55 in February this year. She only has one brother (67, living) with no history of ALS symptoms.

I am 31, just had a my first child 5 months ago, and I know my anxiety is higher than normal. In the past day I've developed a persistent muscle twitch in the pad underneath my thumb. My mom's ALS started slowly in her hands, and I remember her frequent thumb fasiculations in the last years of her disease. This initially sent me down a Google spiral of doom. But I have also read the stickies here, and know that twitching alone is not a first symptom of ALS.

However, I did *not* know there was a genetic link in families with a particular type of dementia and ALS, until I stumbled across this board. And it has me thinking a lot about my risk now.

Is this something worth investigating? I'm not even sure how I would go about figuring out if my grandmother had frontal lobe dementia (or if they even bothered making that kind of assessment). Are there unique symptoms that would have stood out that I might recall, or would her doctor still have her medical records from 2010 and earlier?

Should I see a doctor myself to discuss genetic risk, or does this seem abnormally worried based on my family history? I honestly can't tell if anxiety is clouding my judgement right now, and if I'd be better off going for a walk and seeing a counselor instead of going on hunt for my grandma's medical history.

Thank you in advance for any advice. ALS is a horrible disease, and I'm just in knots over here thinking my baby could someday go through what I went through with my mom.
 

Firefighter58

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PALS
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CA
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tofuriric, I would say to try and forget about the whole thing, and enjoy life, you will drive your self crazy worrying about problems that don't exist.
Al
 
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Nikki J

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Hi
I am sorry about your mom and grandmother.

Alzheimers in the elderly is incredibly common- fortunately FALS is not. The odds are very much in your favor.

Accessing medical records of deceased relatives is not automatic. Only a person specifically designated ( usually the executor) can get them. Nor do I think that getting them will give you answers or calm your fears

For what it is worth the most common cause of genetic ALS and the one most highly associated with FTD and dementia is C9orf72. There are other genetic defects that see both but C9 is the major one. I have C9 so I have learned all I can about it from reading and talking to doctors and geneticists. The experts say C9 does not manifest before 35 I do have a friend who was a couple of months shy of 35 when her very first symptom appeared

What should you do? Talk to your doctor and see what they think If this is impacting your life maybe see a counselor to learn to live with some degree of uncertainty. I suspect you are fine but time will tell you for sure
 
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tofurific

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Firefighter- thank you for the perspective

Nikki- thank you for the information

I was not worried before, when under the impression that my mom had sporadic ALS (she and I both talked to her doctor about that, and it helped). The new info I found here about dementia shook me up a bit, but I do realize the odds are in my favor and I appreciate the time you both took to respond. Hope you all have a happy holiday!
 

Nikki J

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I am sorry that part of the sticky scared you. I struggled with it, I do admit , and discussed it with 2 other FALS people. It is fact but the emphasis is on unusual dementia. I have added too a comment about younger onset dementia. There are 2 European studies that found the incidence of dementia in an 80 yo population to be 30 percent!
 
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