Possible Familial ALS / my symptoms. Your help is needed!

[chrislux]

Good morning to everyone,

I have read the sticky notes, however I still have some questions.
I'm male, 46 y.o and from Luxembourg, Europe.
My first question regards familial Als. Both, my grand mother and my father died of dementia. My grand mother at 89 (onset around 82) and my father at 84 (onset 82). I do not know which form of dementia it was, but based on my father's behaviour and rapid decline I suspect FTD. He also lost control of his right hand from one day to the other and soon after over his legs. Doctors suspected a stroke, but not sure about that.
My first question therefore is: Assuming both had FTD, would there be a chance of developing Fals at around 46 or would that be to early?

Now to my symptoms: I do not have any weakness. 2 weeks ago my thenar twitched for 3 days, that disappeared. After a couple of days the twitching reappeared in the sole of my right foot, to spread to my right limb, my left sole of my foot and occassionnally even my whole body. The twitching of the soles of my feet is permanent 24/7.
I know that you consider twitching not an issue per se, but I read that in familial ALS-onset could be by (whole body) twitching.
Assuming familial ALS, do you consider the twitching bothersome?

Thanks for your assistance!

Chris

 

[Nikki J]

Hi
the incidence of dementia in those over 80 is very high. I think 1 in 8 so the appearance of dementia in your relatives does not make me jump to “ oh this is likely to be FALS”.

onset of symptoms 35-40 years younger than affected relatives is very uncommon. To say your twitching which is very common is from FALS ( where it is a rarer presentation of a rarer form of ALS) is quite a leap.Go see a doctor and get examined

 

[affected]

The connection you are attempting to draw here seems to be extremely tenuous.

 

[chrislux]

Thank you @Nikki J and @affected!
Your input is very much appreciated.

Chris

 

[chrislux]

I have another question: I was diagnosed with Horner syndrome, however no reason for this symptom could be detected by MRIs or CTs.

Could ALS be a reason for the Horner syndrome / different pupil sizes?

 

[Nikki J]

No it is not an ALS symptom

 

[affected]

Definitely not

 

[chrislux]

Thanks for your help. I will have an EMG next week.
One last question: I know that fasciculations don't mean much, nevertheless I read a statement by a neurologue indicating they would be pathological if they would happen continously on a 24/7 basis. That's the case for me.
I have read the sticky but that analysis worries me.
What du you think?

 

[affected]

nope, twitching means nothing
I hope the EMG puts this to bed completely for you, I can see you are very anxious and that is a debilitating thing in itself.

 

[Bestfriends14]

Twitching means nothing on its own. I do hope you take these kind and generous responses, responses that folks have spent time responding to you, and believe them. It truly is best to work with your doctors on any another fears you have going forward. Your EMG will not say ALS and no, it cannot be done too early, so you'll need to believe it. I hope you are able to do this.

Best of luck to you and take good care.