Father won’t talk to me about FALS

[Pelly]

Hey all.

Let me first start this with an apology. I know this forum is abused my health anxiety sufferers, and I hope I don’t fall into that category.

Let me explain my situation:

My grandfather died from ALS in the 1990’s at 56. I’ve known about this since birth, but never put too much thought into it. As I get older, I’ve been getting more curious about a possible genetic link, as I have a fiancé and we are thinking about kids. I had previously been told by my father that his dad’s case was sporadic, but wasn’t given more details. I tried to ask more recently about it, and my father essentially laughed at me and told me not to worry about it. I wish I could be as cavalier as he is about it, but I can’t shake the concern that it could’ve been familial. From my own research, I found that my father’s side of the family lives to be pretty old. My great grandfather and grandmother on my fathers side died at 86 and 87 respectively, of heart failure and stroke. My grandfather had two siblings, both of which died of cancer in their eighties, just a couple of years ago. My father is now a couple of years past his dad’s age at death. Is this enough to discredit any genetic link? The thing that makes me wonder is 1. He died before any of the genes were identified (I think) 2. He got diagnosed pretty young. I’ve heard that increases the chance for a familial link?

In conclusion, I can’t seem to find a way to feel about this whole thing. Am I at increased risk or normal risk? Apologies for the intrusion, and I give everyone on this forum my best wishes. Thanks all.

 

[Nikki J]

Midfifties male is not young for SALS. So cross that out.

long lived parents and siblings and no one else in the family? chances of a mutation as no one had it? Tiny Even if there were one your dad would have to have it 50/50 and give it to you 50/50

I wouldn’t worry. I wish my family had your family’s history

 

[Pelly]

Thanks so much for the reply Nikki. As I was writing out the history I realized that my grandfather’s case seems pretty much as clear cut sporadic as it can get. It’s crazy how scared the mind can get of things we can’t control anyway. Thanks again for the reply.

 

[Pelly]

Hey all. I wanted to get some opinions. I’m 22, and for the last couple of months I have noticed a tremor in my left leg. If I am sitting down, and I life my heel off of the ground while keeping my toes planted, my leg begins to shake. It doesn’t interfere with my walking nor do I have any weakness. I went to my family doctor yesterday about it and he wasn’t concerned, but gave me the option to go see a neurologist if I wanted to. He also tested my reflexes, and I did not have Hyperreflexia. He didn’t check clonus though, which is the one I’m concerned about. Can I have clonus without hyper reflexes? And should I go see the neuro still?

Thanks in advance to any answers!

 

[Nikki J]

You are not describing clonus or any ALS symptom. I think going to the neuro is a waste of time and resources but it is up to you

 

[Pelly]

I will keep this to one thread as to not be annoying. As stated above, I am 23, and have been having some weird symptoms. I am almost out of this rabbit hole, but I have one more question. My left foot has noticeably less muscle than my right. I have no weakness, and as I understand it, if my foot muscles were atrophied, I would have some form of weakness by now. The size difference has also been stable for three months. Could this be atrophy? I apologize for posting here once again, and am happy to be banned if the members feel that I am abusing this forum. Apologies for the question.

 

[Clearwater AL]

You are happy to be banned if the members feel that you are abusing this forum.

Then you apologize for asking the question.

And you are just 22 years old... it's hard to believe you haven't read what
we have written about odds against being diagnosed with ALS at that age.

You just might get the first sentence above.

 

[lgelb]

It does not sound like clinical atrophy, but you can show your doctor. And yes, if ALS were causing atrophy, we would expect some loss of function.

It is very common for feet, legs, arms, and hands to be different L than R.

 

[Pelly]

Hey all- Just wanted to post a little update. Had a neuro appointment today, and a clean clinical exam. Neuro told me what many nervous twitchers have been told before - twitches on their own often mean nothing. Also, my perceived atrophy in my left foot was normal asymmetry. She actually laughed when I said I was concerned that it was atrophy, and said that the feed tend to be very asymmetrical in most people. Also, the "clonus" I had in my ankle is just a normal physiological tremor.

It turns out, when a tremor is only repeatable when doing one very slow, controlled movement, it's not really a tremor, just muscles that aren't used to being used slowly having trouble with being used slowly. I was also convinced I had a limp, but lo and behold, my gait was fine.

She offered an EMG due to the fact that I have a case of ALS in my family, but I refused. In my experience from reading this forum and Reddit, the EMG often doesn't help the anxiety. So, in total, I will not be back here. I want to thank all of the people that have this disease that have commented and reassured me in some pretty dark times. To any people that come across this thread in the dark pit of anxiety, I will say this:

1. Go and get checked out. It's important to go to doctors when we are concerned, and no internet post can provide the reassurance that a trained neurologist does.

2. This is the most important - TRUST YOUR NEURO. They have trained for years and years to get where they are, and I promise you, you don't know better than them. Are there cases when neuros have been wrong? Absolutely; just like any other doctor. But, it happens rarely enough that it's silly to worry about. (much like how it's silly for a 23 year old to be concerned about ALS)

3. This is the hardest part. You have to let go. We are all going to die. Whether or not it comes tomorrow or in 50 years is not up to us. But for today, you have a life to live. So live it, and stop worrying about something you can't control in the first place.

So in total, I want to reiterate my thanks to the members of this forum. You all help people out of the love in your hearts, and I think that stands to show what an amazing group of people exist on this forum. I honestly don't know how you put up with people like me. So again, for the third time and from the bottom of my heart, thank you all and goodbye. I won't be back.

Will