Is this Bulbar ALS? Worm tremor tongue

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Bmm922

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Hello! I am writing like many others here in hopes to get some insight on some strange symptoms I have been experiencing for the last month. I am a 30yo mom of 3 under 5yrs old and my fear of what’s going on with my body has been weighing on me for weeks. I will start from the beginning…

End of March I started noticing a dull headache and a tingling sensation in my left leg, foot, and occasionally arm and hand and my vision was off. Almost as if I could not focus correctly, sensitivity to light and I could not shift from light to dark as well. After this went on for a couple of weeks I sought out my doctor who ordered a brain MRI and MRA (my family has a history of aneurisms). That all checked out clean.

I continued to have these symptoms but the head pressure became less and less and I started seeing a chiropractor. The vision issue is the same but it seems to be a little better or I am just getting used to it….

Fast forward two more weeks…I noticed that I had mild scallop tongue and my tongue was tremoring…not just twitches here and there but the worm tremor even at rest. It is still doing that to this day and I am noticing more weakness in my left side and random muscle twitches all over my body but most often on the left side. I have always been a little more weak on that side since I broke that wrist years ago and have always had a very slight tremor in my left hand but now I’m noticing it way more since I’ve been paying such close attention to it. I am not dropping things and still have strength but I’m just noticing it’s weaker then my right.

Back to my tongue and mouth…the next day after I noticed the tongue tremoring, I noticed it felt really heavy and big. Like it’s pushing up against my front teeth more then it usually does. I have also felt a heaviness in my throat. No issues with choking, swallowing or speech. I feel like I am fumbling on my words at times bc I’m on such high alert but no one is noticing a speech slur or that I sound any different.

The headaches and tingling have pretty much gone away but this constant tongue tremor has me terrified as I am not finding anywhere that the tongue tremor like this isn’t Bulbar ALS. :(

I am scheduled to see a neurologist this week but can anyone here tell me if the constant worm like tongue tremor can be linked to anything else?

Thank you so much for your time and any input you may have.

I also want to add that I had a ton of bloodwork done to rule out the many of the typical autoimmune diseases and those came back negative. I had a neck MRI which found a very small syrinx in my spine but the neuro who ordered that didn’t feel it explained my symptoms due to its size and where it was located…lower in the spine. She advised me to see a neurosurgeon..scheduled to see that doctor in august but hoping to get in sooner. :(

The tongue tremor didn’t start until after I saw this Neuro. So I’m seeing another this week to now address these new symptoms.
 

affected

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That does all sound scary, especially when you have young children.
I can say straight up that this truly is not connected to ALS.
Have a good read here, slowly and carefully.

Headaches, scalloping, tremors, tingling, vision issues - whatever is going on, I have never heard of ALS starting this way.
Please try not to second guess your doctors by googling, it is going to freak you out with 100 different awful ways to die, when this is likely to be something very treatable.
 

Bmm922

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Thank you so so much for your reply. This has been so heavy on me for weeks now. In your experience, does the tongue feeling heavy and pushing forward against my teeth along with the worm tremoring sound an alarm? Like, I notice I’ll be doing something and my teeth are opened a little with my tongue pushing forward against my teeth. Does the tongue losing muscle feel like that where you can’t keep it in your mouth? I also have gotten throat spasms in the past but not any since all of this started. Out of nowhere I would be talking and get this sharp pain in my throat and have to drink water to calm it. Is that a symptom of Balbar? I’m sorry to ask so many questions. Just struggling over here bc the other symptoms that point away from ALS are easing up while the ALS symptoms seem to becoming more and more. :(
 

Bestfriends14

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No, no, no, and another no. Nothing you have stated is any bulbar onset I've ever heard of or witnessed. Please, for your own health and the good of your kiddoes, please let go of a disease that you have zero evidence of. If you cannot, really and truly, I advise you to reach out to a professional that can guide you through letting go of this unfounded fear.

I sincerely wish you the best.
 

affected

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No, my husband died from bulbar onset ALS and he felt perfectly normal, as do all PALS.
He could not believe that he would simply choke, and everyone would ask if he was drunk. He didn't even think he sounded any different.
Please read the link I provided, it is really there to help you.
You just are not describing ALS as I said already, your 'symptoms' are not becoming more and more like ALS at all but further and further from it. This is great news! I just hope you can work with your doctors to solve whatever is going on.
 
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