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gsmiles52

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My brother died last year 10/31/2017, from ALS w/FTD he was 56. His ALS started in 2012 with a small fasciculation in his upper arm. At the time he was a airline pilot, he went to the Dr. and was told it was stress related. The FTD was more of a problem than the ALS and he eventually lost his job. The fasciculations progressively got worse but he didn't develop any weakness in his hands until about 15 months before he passed and has was able to walk right up until the day he passed away. I took care of him for the last 2 years of his life he lived with me.


So to me . . this is very strange and it just hit me about a week ago, and I do know that the odds of this are next to impossible because he is the only person in our family to have had ALS but I started getting fasciculations in my foot and calf up my leg and across the front of my groin area! No pain just constant muscles jumping. Of course everything that has happened to me physically in the last 6 months I'm somehow fitting into this . . I've been tripping on flat surfaces, like my foot just isn't coming up enough, and today I almost fell down my knee has been feeling weird, kind of rubbery/weak.

I am super healthy, height/weight appropriate, 58, female, happy fun hard working-good job, 4 kids, and never, ever go to the doctors. Walk the dog everyday, loves the outdoors, and definitely not health anxious I do have an appt with my GP because of the very strange coincidence of the muscle thing.

Has anyone anywhere every heard of such a thing? Brother - Sister no other relative ALS diagnosis?

Thanks in advance if anyone answers.
 

KarenNWendyn

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The odds are greatly in your favor that this is not ALS.

Before you go see your doctor, try standing up on your toes (one foot at a time). Then try walking on your heels. If you can do these things, you’re fine.

But I’m glad you’re seeing your doc because there are many reasons one can fall, and it’s good to get a general evaluation. Make sure your doc tests strength and reflexes. They’ll send you to a neurologist if your exam is abnormal. Even if you have an abnormal exam, many other conditions would be on the table ahead of ALS.

So sorry to hear about your brother.
 

Nikki J

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Generally people who are FALS have lots of relatives affected. Did either of your parents or their parents and siblings have neurodegenerative diseases especially early dementia? I would be more concerned if so.

I am glad you are going to the doctor. Always good to check. Don’t worry about twitches way too non specific. If you truly have foot drop ( can you walk on heels and toes?) that is more concerning.

I am very sorry about your brother. I lost my mother to FTD ALS and my sister to ALS ( also 3 of my mother’s siblings etc)

Let us know what the doctor says
 

gsmiles52

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thank you for responding and your kindness since you both are struggling with ALS .. . I truly appreciate it.

My brother's als/ftd was very atypical. The 2nd neurologist I took him to disagreed with the diagnosis saying "if he had ALS he'd be dead already" that Dr had no bedside manner . . . . he had no weakness in his hands or shoulders until almost 3 years after the first muscle spasms started in his arm. We consulted 3 neurologists, 2 agreed so we got the diagnosis and finally SSDI. The last five months of his life he went fast but until then he was pretty good physically except the FTD which was very hard . ..

Anyways that's how I've built this thing up in my usually very level head! Thanks for reading and I will be sure to follow up . .though I am going to insist on seeing a neurologist no matter what the GP thinks.

take care and have a wonderful day
 

NinaP

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I wish and hope you are healthy. Also Nikki my god how much your family has been through.
 
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