Flail Arm Syndrome?

[millymolly]

Hi everyone, I hope I can get some answers here as struggling to find them elsewhere?
My mother's onset began in 2014 when she had a procedure for carpal tunnel syndrome on her right hand through weakness and then it happened to her left hand. From 2014 to January 2020 there was a slow progression with her hands and arms getting weaker and then she found that she could no longer do her daily sit ups and had disphasia. 14th January 2020 she was finally diagnosed with MND the FAS variant. She passed in November 2021. I am very worried that I may now have the same thing as I watched my mother from onset so think I know what I am looking for. I believe that my mother's mother also had it as I remember her thinking that she may be pregnant in her 70's as she was having fasciculations in her abdomen? my mother experienced the same thing. My grandmother took her own life. I now have noticed slight atrophy in my right forearm and slight wasting of the thenar muscle but with no weakness and no fasciculations and wanted honest advice from others who know. I have seen my gp who has referred me onto nuerology but that may take time? Any advice would be greatly appreciated as hyper anxious right now. Many thanks in advance.

 

[lgelb]

Very sorry about your mom and grandmother, but with the flail arm variant as you know weakness and atrophy track together and bilaterally. And even if you had a genetic form of ALS, your age of onset would be more like your mom's, not decades before it. If the neurologist is suspicious of any form of disease, s/he will refer you for tests. With no weakness, the odds are very much in your favor.

Best,
Laurie

 

[millymolly]

Hi everybody
I am making myself really unwell with anxiety. I have noticeable atrophy in my right forearm and in my right thenar muscle. My thumb feels numb and it is now working its way around my wrist. My mother passed away from MND last year which I myself witnessed. I really thin I have it myself but keep telling myself that to get symptoms 3 months following my mother's passing would be too much of a coincidence? I have an appt with a neurologist on 12th December. My arm also feels heavier now.
Thank you for reading my post.

 

[ShiftKicker]

Hello-

I've moved your post to your already open thread. If you could keep posting here, that would keep everything together and be easier for people to see what has been discussed before.

I recommend you have a read here: Read Before Posting
It provides a lot of information and reassurance for people. The best thing to do is visit with a doctor. While the wait is hard, there's nothing the people here can do for you in the meantime. If you are struggling with day to day anxiety, it might be a good idea to find someone qualified to talk to about some tools to help with this. Knowing someone who has passed with ALS can be traumatic, I am sorry for your loss.

Take care

 

[affected]

You are right, you wouldn't have symptoms now if it were FALS.

I'm so sorry about your mum.

Please see a doctor about your anxiety as that can be addressed no matter what else is going on.

 

[millymolly]

Hi, thank you for your reply. How do you know that I wouldn't have the same symptoms as my mother's 2 decades before?
Thank you

 

[affected]

because you said your mother was diagnosed just 2 years ago, not 2 decades ago?