Desperate, dark place. 42 with persistent tongue twitch

[BlueCup25]

Hi all,
I am writing to you in tears. I have not been able to enjoy any peace or happiness since this all started. First, I do have anxiety particularly over health.

I have been diagnosed years ago with BFS. I feel twitches everywhere in my body and they don't particularly bother me as I'm used to them coming and going.

About 2 weeks ago my tongue began to twitch at rest. It would feel like a small pulse or popcorn in my mouth. I also feel slight bubbles against the roof of my mouth. This happens randomly all day. Today was a flutter type contraction feeling at rest. This has been going on 3 weeks.

I am completely down the rabbit hole. I'm convinced this is ALS and I am going to leave my 2 children on this earth without a mother (single Mom). I cant function.
I scrolled through so many stories and the one thing that is very concerning to me is the amount of EMG's that were dirty or confusing. I cannot bear for this to happen to me. I cant take a chance on a neurologist with terrible bedside manner that says the wrong thing. I'm totally torn as to what to do.

Do I slur or have swallowing issues?--- no not really. Yes I have stumbled over a few works lately. Yes I have a lump in my throat and have to wash down my food. I googled tongue twitches and found a post from a lady here who had tongue twitches and atrophy and has ALS now.

Please help me with your knowledge.

 

[ShiftKicker]

Hi there-

It's not clear how we can help you here except to provide you with the link to the basic info and a recommendation you see your doctor. If you won't go to a doctor despite being concerned you have a terminal disease, there's a definitely problem. From the language you use here, it's also clear you are struggling with anxiety and are catastrophizing and winding yourself up. Visit with your gp and go from there.

Read Before Posting contains the information we stand by. Twitching absent clinical weakness (for which you need to see a doctor to be assessed) can mean a whole variety of things, including the thing you've already been diagnosed with.

 

[Clearwater AL]

You can’t take a chance on a neurologist with terrible bedside manner that says the wrong thing. You have been diagnosed years ago with BFS.

*Apparently you have seen a Neurologist before.

You’re convinced this is ALS and you are going to leave your 2 children on this earth without a mother (single Mom). You can’t function. It’s clear you are ,having serious Health Anxiety.

You’re convinced this is ALS. That’s not for our extremely ALS knowledgeable to help you with… that is for a Neurologist to diagnose. Like when you saw one previously that diagnosed you with BFS.

Others may further comment but… really start with a visit to your PCP soon as possible and hopefully he/she can also help you with your serious Health Anxiety… which will reflect onto the love and care of your two children.

I hope the best out come for you as you struggle with this.

 

[BlueCup25]

When I saw a neurologist before my tongue was not twitching. I had a clear clinical exam in December.
The tongue twitching is new and persistent. I know and admit I have debilitating health anxiety. Do I go demand tests or do I give this time? The thing is that every day when I feel the twitch it sends me into a white hot panic, not matter what I was enjoying. Thanks for taking the time to read and consider my situation.

 

[ShiftKicker]

I think you will need to work out what the issue is in some other place than an ALS forum. A forum for those with a terminal disease is not a healthy place for someone with HA. You have a gp and you have a neuro who have both seen you and can track any changes that may have happened since they saw you last. Your best bet is to speak with your gp to ask for further medical advice.

Please take care.