Could I have bulbar onset like my mother

[JK38]

Hi, I am a 35yr old female. I lost my mum (aged 47 when diagnosed with als and died aged 50) 4 years ago. I started have pins and needles/numbness in my arms about 4 weeks ago and attended the GP with serious concern of it being ALS. The doctor was not concerned but did bloods and they have come back that I have an under active thyroid. Currently on meds for that and the numbness in my arms has gone. However this past 3 weeks I started have twitches all over my body which come and go l, however the ones on my tongue are really bad and constant. My tongue it literally vibrating and feels like it is too big for my mouth. I have a developed a dip in the middle of my tongue and my tongue is scalloped. I feel like I am having difficulty pronouncing words although everyone around me says I sound fine. I have 4 really young children and I am so scared that this could be ALS.
When I spoke to my GP he advised me at the time of my mothers diagnosis she had genetic testing done which came back negative and her case was noted as sporadic, but I can’t help thinking it always has to start somewhere. I am beyond scared and anxious.

 

[lgelb]

Very sorry about your mum, but I don't think you have ALS. Starting the thyroid hormone can be its own shock to your body and may take some time to settle down. If no one around you hears speech problems, that rules out speech problems. Drinking throughout the day can help.

And as you know even if your mum had a familial form of ALS, which it sounds like she didn't, the age of onset generally stays about constant, whereas you are 12 years younger than she was at onset. But you haven't described ALS in any event.

I would stay in touch with your GP for followup testing to make sure your thyroid levels have been adjusted to where they should be, and sometimes little tweaks in the amount of medication irrespective of those levels can be helpful with things like twitches.

Enjoy your children. If you can't be fully present for them because of these worries, it would be time to seek counseling.

Best,
Laurie

 

[JK38]

Many thanks Laurie, honestly it’s completely consuming my life at present. I had got my bloods checked this week and they have advised my thyroid levels are back to normal but still going to monitor me. I told myself if the twitches calmed in my body I would start living again and as soon as they seemed to settle a bit my tongue has went completely insane. The twitches are constant on my tongue and it feels like a burning sensation, but no swallowing issues, secretions etc. I just remember back to when my mother had early symptoms and she asked constantly was her voice changing and we all thought no, but we know how it turned out. I was with my mother every step of the way with her MND journey, every appointment and she ended up moving in with me for the 3 years of her illness. I feel like I know the disease so well I am looking out and watching my body for anything I can link it too. I want to return to my GP and ask for a referral to a neurologist but at the same time I’m so scared.