Bulbar ALS worries

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poly

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Firstly, I want to introduce myself a little bit. I´m 22 y.o. - football player. My grandmother had ALS and I am really concerned that I might have it too now because I have some symptoms.

It started about 9 months ago when I had random twitching all over my body. I wasn´t concerned at all that time and it dissapeared, it lasted about 1 month. Then my football season started and I had no issues at all. But it has ended about 3 months ago and I have for about 1,5 month twitching again and since then I am absolutely terrified. I also have swallowing issues. It´s harder to swallow for me in general and especially in the morning before drinking and I have also dry in my mouth. Lately my hand also started to hurt but I can´t say that I feel objectively weakness there. Twitching seems to be worse after hard training these days. My tongue is also twitching I think but I can´t feel that. I have no problem with my speech I think but I can´t tell for sure, I have objectivitely no weakness, subjectively sometimes. Could it be a bulbar form of ALS? I´m going to see doctor asap but I also wanted to know your opinion.

I also forgot to mention that my back and especially neck hurt but that´s a problem I have already had for about 5 years. MRI showed nothing wrong long time ago.
 

lgelb

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Hereditary forms of ALS generally start at about the same age. I doubt your grandmother (and am sorry for your loss) had onset anywhere near your age.

Tongue twitching is generally benign, just as all twitching without clinical and ongoing weakness is.

So I'm sure your doc will be reassuring. Twitching after training (and after the season where you were probably getting sports drinks before/during/after practice?) suggests looking at your diet and hydration, to balance out your electrolytes. Your doc may be able to help you think about that, and you can start a food diary.

Best,
Laurie
 

poly

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Thank you very much for your reply, but I´m still scared af. I mean.. could fasciculations be a first symptom with disappearing for a few months? Could swallowing problems (it´s just harder and it´s much worse just after I wake up, then it gets better) be a second symptom 9 months after a fascs appeared for the first time?

PS: I also feel palpitations, like my heart beat in some parts of my body
 

lgelb

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No, fascics are not a symptom in themselves and esp. not coming and going. Swallowing problems in ALS are not as you describe, either.
 

poly

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I have read that if you stick out a tongue just a little bit and you have a tremor there then these fascics can´t be benign. I can´t even feel it which is another bad sign, only when I put a finger there..
 

lgelb

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You are misinformed, and I would stop reading here. Besides the suggestions above, your doc can order another MRI if your history suggests it (five years is a long time when you play football).

All the best.
 

poly

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Man saliva gets hard to swallow (feels like having something in my throat), food is also harder than before, only fluids are ok. Twitching still all over my body. :( This is not looking good for me I don´t know..
 

lgelb

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Again, contact your doctor. There is no reason to be afraid but you are talking yourself into it. Also consider a health anxiety forum where you can hash these things out.
 

poly

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Thank you for reply you are awesome. I have actually already seen a neuro. He said that my tongue is shaking but there is no atrophy (yet). He tried my reflexes and they were abnormally quick but he wasn´t concerned much. He tried reflexes like Babinski etc. and they were all negative also he said that it´s unusual to feel the fascis from the very beginning like me because in his opinion MND pacients don´t feel their twitches most of the time but I don´t think that it´s true. The outcome was that it´s normal and I have no weakness so it´s unprobable to have MND. But I still have these swallowing problems which may be that weakness. I´m so scared I don´t even want to go to EMG. It can´t be just a coincidence that I have these fascics and now swallowing problems.
 

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Truly, I doubt you know more about the fascics in ALS than your neuro. Or us. Think about how insulting that sounds to people who actually have/care for those with the disease you're chasing.

A normal exam, no visible clinical weakness, sporadic symptoms. An EMG [that would completely rule out ALS even though you shouldn't need it] is evidently being offered to you and you don't want it, so what's your plan?

ALS doesn't present as you describe. There is no coincidence about twitching and swallowing problems. In the sequence you describe, they both arise from anxiety and hypervigilance.

Not sure what we're doing here. You don't believe us and you don't believe your neuro and you don't want an EMG. We seem to be at an impasse.

I'm closing the thread since it's not proving fruitful. Please don't open another, but do get some help.
 
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