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Virginija

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Apr 12, 2015
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Loved one DX
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LT
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Vilniaus raj.
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Vilnius
Hello everyone,

I've been occasionally reading these forums on and off for a while now and I never intended on actually posting here, but since certain thoughts seem to have taken control over my daily life, I'm turning to you for help.

My dad was diagnosed with ALS 2 years ago at 48 years old.

Nobody in our family history had ever had it so I suppose it should be ruled as sporadic. To be honest, we hadn't even heard of such illness until we learned the diagnosis.

His symptoms began no more than a year before he was diagnosed and it started off with weakness in his left arm. Now, two years later, he can still walk, speak and do most things on his own, but he has poor control over his left arm, he has problems with keeping balance and has fallen down while walking a couple of times, his speech has become quite badly slurred and he has problems controlling his body overall.

I don't exactly have a good relationship with my dad, and even though we lived under the same roof for 18 years, we don't talk to each other much because every conversation ends in a fight. That being said, I didn't take the news about his illness well. I cried and cried a lot and had anxiety attacks nearly everyday for the first few weeks after finding out. Since we live in a small country and nobody here is aware of such disease (even most doctors aren't), I started doing internet research obsessively and at one point had gotten to the point where I was starting to imagine that I was developing symptoms myself, for example, I constantly thought that my hands were shaking and all my muscles were twitching. I was experiencing quite a lot of anxiety over that, but at the same time, I was aware of the fact that it was just my mind playing tricks on me and my anxiety, and that there logically was no chance that I, a perfectly healthy 21-year-old female, could have ALS.

Forward a year and a half. I am now 22 years old, and I thought that the days of anxiety attacks and imaginary symptoms are long gone. Well, I thought so until a couple of months ago. The difference now is that I no longer think that what I started experiencing is only in my head.

About a year or so ago I started experiencing some difficulties while talking. I'd get "stuck" trying to pronounce some words, my speech would get slurred at times, especially when trying to say longer sentences, and I always had a sensation of having excess saliva in my mouth that would disturb my speech. Fast forward to today, it hasn't gotten any better. Quite the opposite, actually - I now have to really gather my thoughts, swallow all saliva and prepare for speaking before I even open my mouth, otherwise it comes out as a slurred mess that's barely understandable.

I've been trying to attribute my speech problems solely to stress and anxiety that I've been experiencing and not to think about it too much.

Then a couple of months ago my left hand started to tremble.

Once again, I tried attributing that to a variety of causes, such as stress, tiredness and also vitamin D deficiency that I was diagnosed with.

However, the hand trembling has only gotten worse and has now spread to other parts of my body as well, and in the last week I've also started experiencing notable muscle twitches in all of my limbs and weird weakness in my arms.

With every slurred word and muscle twitching I can't help but start having more and more anxiety. It is now starting to take over my daily life, and I feel panicked and mad at myself for feeling so at the same time.

Could it be that I'm actually experiencing early ALS symptoms? Could it be that this is turning into familial ALS -- I mean, familial ALS has to start somewhere, and what if it's started with my dad, and now I'm the next in line?

My dad was 47 when he felt the first signs, and I'm only 22, but I have read enough stories to know of people who developed this disease at an age as young as 15.

I would have never thought twice about the things that I now consider to be "symptoms" if my dad didn't have ALS, and even if I did, I wouldn't be posting on these boards because I am fully aware of how crazy it is for someone to randomly attribute these symptoms to a disease as rare as ALS. But given the situation that I am currently in, I can't help but worry.

In short, I've come to the conclusion that I'm either a) experiencing first signs of ALS, or b) I have mental problems and should schedule an appointment with a psychiatrist.

This has turned into a ten times longer post than I initially intended to type out and I can only hope that somebody will have the nerve to read it all. If somebody does - thank you so much, and please let me know your thoughts.
 
Hi
The chances of FALS are very very very very slim. Also FALS tends to strike within certain age groups depending on the gene involved. The genetic form that hits an almost 50 yo male is not going to hit a 22yo woman ( in general the average age of the various FALS onsets tend to be a little earlier in males). So the whole idea of FALS is unlikely plus the ages we are talking about.

Your symptoms don't sound like ALS to me. Your d deficiency accounts for most of them and so could stress and anxiety
You are reporting symptoms all over ALS starts in one area like your dad and his arm and spreads only as the disease progresses.
Sorry about your dad but do not worry for yourself
 
VIRGINIJA: You don't have ALS. You didn't describe ALS. You don't have the symptoms of ALS.

Perhaps a psychiatrist can help you with your anxiety.
 
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