21 And Anxious

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Lc06091

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So to preface this, I sustained multi year childhood abuse that has lead me to have severe health anxiety. It is also confirmed that ALS runs in my family with my great-grandfather and 3 of his siblings as well as a nephew of his have all sadly passed from this disease.

I was roughly 15 when I was fully able to comprehend what caused my great-grandfathers death. After leaning that it was ALS, within a few months I began experiencing twitching throughout my body. Anywhere from my legs to my arms, face, neck, back, you name it and it would twitch. This was also much more noticeable when I was lying still or when I was concerned about it. Honestly it seems as though it’s much worsened when I sit and worry about it.

This has been going on for nearly 6 years now with no other symptoms until about 2 months ago. Around 2 months ago I had a strange feeling in my arm. Nothing major and not weakness just a strange feeling. Well it didn’t take long for me to fall down the hole of googling and thinking the worst, feeling like my time had finally came to finally start displaying symptoms. Soon it felt like both of my arms were not weak but very clumsy and I found myself feeling like my arms could move fine but they didn’t feel like they were working correctly.

I made an appointment with my dr and he didn’t seem to concerned. He ordered blood work and pretty much everything was normal other than having marginally high calcium levels and moderately low vitamin D (which my pcp never called me to elaborate on). After I’d say after 3 weeks or so my arms began to feel better especially after reading through these forums, and trying to worry less about it.

Now, I seem to have a weird sensation in my right calf. Again no weakness but it just feels strange, almost like a soreness when I walk. I have began stretching both of my calf’s and my right calf seems to ache more than my left when stretching. It also seems to be numb feeling sometimes, but never clinically weak.

I have read and read these forums and I’m sure that this is just my health anxiety but my family history of ALS makes me nervous. My great-grandfather had the disease, but my grandmother who is in her mid 60’s and my mother in her early 40’s show no symptoms at all. I am 21 and realize that my anxiety is probably causing this but with a family who doesn’t worry at all about it and a lack luster experience with the Dr., I am just trying to find some sort of reassurance.
 
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Nikki J

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I am sorry that you have anxiety and for your difficult childhood

your weird feelings and numbness as you says are not indicative of ALS. I hope you are correcting your vitamin D as it can make you feel poorly in some of the ways you describe which of course could make your pre existing anxiety worse.

I am sorry that ALS touched your family but it does not seem that it penetrated your branch. The fact that 4 siblings were affected in your great grandfather’s generation tells me this would be a highly penetrant mutation meaning that if your grandmother and mother had inherited it you would know. if they don’t have the mutation then neither do you.

please be reassured. Please also seek treatment for health anxiety before it ruins your life

good luck
 

Lc06091

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I’ll add that after talking to my parents they mentioned that 5 of my great-grandfathers nephews all preceded his death from this terrible disease in addition to his siblings that were affected. All of the nephews that passed from ALS were in their 40’s, 50’s, and one in their 60’s. My great-grandfather was the latest in life to develop the disease, being diagnosed around 72 and passing away at 77. Unfortunately, all of these deaths have been many years ago other than one. I’m not sure what sort of research that could have been done regarding the high penetrance in my family, and wish that they could have been studied. Thanks for your reply Nikki. Only presenting with twitches coupled with my crippling health anxiety, I’m fairly sure that these are anxiety induced symptoms but your reply is certainly reassuring.
 

lgelb

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The best way to get past health anxiety, in addition to counseling, is to find things to do that are more satisfying. Being young in this pandemic is not easy, but there are still ways to do that, from volunteering to serve the less fortunate to finding new passions.

Every PALS here would be happy for your level of health. You can't change your family's past, but your own future is your own to write.

Best,
Laurie
 
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