Familial ALS?

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Careforall15

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Joined
Jun 27, 2023
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Lost a loved one
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00/0000
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US
State
MI
City
Dearborn heights
Want to start by saying thank you for whoever is going to take the time to read this/reply. I’m a Mid 30’s male dentist, come from a family of 6 kids (youngest) oldest is upper 40’s. None with als or my symptoms thankfully.

Our mom passed from Als at 67. 2-3 years from dx until the end and I was one of the caregivers. It was rough. Mother was one of 7 kids. Two of them had some sort of dementia/Alzheimer’s late in life as well, none with als to date. While my moms mood changed a few years before her dx, she was always competent and did not show signs of memory loss like in FTD. She also became epileptic in her 40’s. She never twitched during her battle with it.

This comes to me. I recently developed random twitching, muscle pulling sensations, pins and needle feelings. It’s pretty painful at times. My ability to exercise has gone way down. I twitch/cramp and get odd sensations like heat in my face shoulders and arms. Random sharp pains, muscles quiver too randomly. I have had a noticeable but slight decline in my working memory too in the last few years. My movements are different now too. I’m horribly profoundly fatigued. If I work out I’m out for days before I recover and never fully recover.

Did an emg and bunch of blood work. Brain/spine scan, more blood work again. No findings pointing to the problem. I know it’s currently not Als, but I read an article talking about cramp fasciculation patients eventually going into Als/anterior horn cell a 4-6 years later and it sent me into a spiral. I have a few little kids at home and it’s months wait before I see the specialist again to ask about it. I’m sorry to all who went through this. Am I crazy to think this could be genetic and it could turn into these? Thanks again
 
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Very sorry about your mom. Most often familial ALS manifests at a similar age from generation to generation. You are about half the age that she was at her dx, so the odds are very much in your favor.

In addition, your issues do not paint an ALS picture, even in the context of some hypothetical prolonged BFS prodrome. Not sure what article you read, but I doubt that whatever case report(s) it presented overlap significantly with what you report.

One thing I would be looking at: your sleep. Even if you get enough, it may be fragmented, as is not unknown with "a few little kids." I would video it, use apps/a smart watch if you have one, and if there is any indication that your doc supports, consider a sleep study, which can now be done at home. Re-evaluating your mattress and pillow could also do no harm.

Best,
Laurie
 
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