@lxps66
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Leslie replied to the topic Familial ALS in the forum Diagnosis Information and General Questions 1 year, 5 months ago
Mark…I tend to agree. I have a lot of thinking to do. I’m already on meds for the anxiety/depression. It’s comforting to know that I have this forum for support. Thank you🙏
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Leslie replied to the topic Familial ALS in the forum Diagnosis Information and General Questions 1 year, 5 months ago
<p style=”text-align: left;”>Thank you Meredith. If they find an als gene with my dad, I’m vacillating whether or not to get tested myself. I know new therapies are on the horizon but I have such anxiety and depression…I don’t know how I’d handle knowing. Yet, I’m miserable now anyway waiting for all the symptoms to start. I began having constant…[Read more]
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Leslie posted a new activity comment 1 year, 5 months ago
Thanks Amanda… I’m having a really hard time coping with the whole situation. I think more so for what it could mean for my children
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Leslie replied to the topic Do you experience muscle twitching? in the forum Living With ALS 1 year, 5 months ago
Hi all,
I’m new to this forum. My grandfather died of ALS in his mid 60’s. All I remember is him dragging is foot when he walked. Now, my 85 yr old father seems to fit the bill for respiratory onset ALS. We’re bringing him to an ALS clinic next week and will also have genetic testing done. For the past 3 months, since I realized what his dx wi…[Read more]
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Leslie started the topic Familial ALS in the forum Diagnosis Information and General Questions 1 year, 5 months ago
<p style=”text-align: left;”>My paternal grandfather died of limb onset ALS at age 68. My father, 85, has been showing signs of respiratory onset ALS this past year. Specifically, 40 lb weight loss within the year, widespread fasciculations, progressively weakening voice, overall muscle weakness but remains somewhat ambulatory (shuffles), choking…[Read more]
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Leslie became a registered member 1 year, 5 months ago
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Hello Leslie,and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Thanks Amanda… I’m having a really hard time coping with the whole situation. I think more so for what it could mean for my children
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Hello Leslie,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Hello Leslie,
My family has an extensive history of ALS, over 14 people starting with my grandfather’s generation. I’m 54 and have been twitching and cramping for decades — I’ve been involved in a pre-fALS study for about a decade. If you have any questions I’d be happy to talk sometime. Just let me know.
Amanda