Old 03-13-2018, 03:48 PM #1 (permalink)
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Question Genetic testing

Hi Everyone,

I am new to this group. My father passed away from ALS on September 26, 2017. He was Dx on 3/17. When we were given the Dx, the doctor asked about his family history illnesses. My great grandfather died pretty young and was told it was Alzheimer's or something related to that. They lived in a third world country and at the time, they just thought he had gone crazy. Anyway, he died pretty young of a neurological disease. My grandfather lived to about 90 but suffered with Alzheimer's for most of his life. My dad's older sister was dx with Parkinson's many years ago but she's still alive thankfully. The neurologist actually said that my dad has fALS because these 3 different neurological diseases are related. He recommended that my sister and I get genetic testing to find out. Georgetown University ALS clinic in DC is who treated my dad. Should I get the testing done? I have had symptoms for a while now of numbness (over a year) and the pass few months I have had weakness in my left side. It started in my hand but now I'm noticing it in my foot (mainly heel) a little as well. I recently started noticing atrophy in my left hand/arm too. I have fallen a few times but I chucked it up to me just being clumsy but now that I have noticed the atrophy, I am actually getting worried. Does anyone have family history related to mine? Should just keep on living blissfully ignorant until something worse happens? My mom wants me to get tested but in all honestly, I am scared of the results. Is there something else that could be causing this? Are these neurological diseases really related? Any information will be greatly appreciated. Thank you in advance.
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Old 03-13-2018, 03:51 PM #2 (permalink)
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Default Re: Familial ALS ruled out?

Also just a quick note...My dad also had FTD on top of his ALS.
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Old 03-13-2018, 04:04 PM #3 (permalink)
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Default Re: Genetic testing

If your dad was not tested then it is not recommended that you an undiagnosed person get tested as there is not an identified family mutation. This is discussed in the pinned post at the top the FALS subforum.

If your family mutation is known then testing is an individual decision. Also discussed in the pinned post

Your family history is suspicious but if your dad was not tested and found to have a mutation it is not clear it was FALS.

If you wish to discuss your symptoms kindly do so in the Do I have ALS sub forum in a new thread
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Old 03-14-2018, 09:14 AM #4 (permalink)
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Default Re: Genetic testing

Thanks for the reply Nikki. Sorry if I posted in the wrong thread. I am new so I wasn't sure where to do it. I just find it odd that my dad's neurologist recommended it to us that we get tested. Unfortunately, my dad didn't get tested. The FTD actually appeared before the ALS and he never really fully grasped the severity of his condition. He only understood he had an illness without a cure. Even though I'm sure he felt completely rotten, he kept his spirits up that one day he would be cured. We couldn't break his spirit and tell him that he was dying. Once we got the diagnoses, it was a rapid downward decline in his health so I don't even know if there would of been an opportunity to get it done. Anyway, I hope people have family history close to mine and can share their stories.

Again, thank you for your time and I am sorry from the bottom of my heart that you have ALS. <3
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