Bulbar ALS/MND

[Frightened]

Hi all, newbie here.

2 years ago I suddenly developed bodywide fasciculations/ twitches. They're pretty constant, mainly in legs but all over. I was in a panic once I Googled ALS. After 4 months of NHS waiting I got a clear neuro exam and EMG on both legs and an arm (clean aside from a few fasciculations in calf).

Fast forward to 2 weeks ago and I suddenly developed a tightness around my throat. Swallowing feels harder and tighter, kind of constricted or pressured. Sometimes my swallow feels delayed, or I have a sudden urge to swallow that catches me by surprise. I've also started having lots of ear crackling and popping which seems like eustachian tube dysfunction.

I now fear that it was bulbar onset ALS all along, and the EMG missed it as they only checked limbs. I think I have the start of dysphagia and the muscles in my ENT area are now weakening. I doubt if my doctor will take me seriously after the panic last time though. I don't know what to do. I'm sure this isn't right though.

[Fishmanpa]

Please READ THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!).

Positive thoughts

[Frightened]

Please READ THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!).

Positive thoughts

Thanks, I have read that, but the problem is all the other stuff I've read too.

[BlueIris]

You're anxious and hypervigilant, that's all.

[ankietyjoe]

Thanks, I have read that, but the problem is all the other stuff I've read too.

Stop reading it then.

You've been medically cleared. Go out and enjoy the hayfever.

[Yourboymj99]

Hello frightened,

Nothing in your post sounds even remotely like bulbar onset ALS. It's obvious your health anxiety is in high gear right now so it would be best to avoid reading information online which can easily be misinterpreted. Try and get outside and go for a long walk, jog or anything really. Your fine.

Take care

[Frightened]

Thanks all. I know my anxiety over this is pretty high right now but that's as a result of my symptoms, and those outlying cases I've read about that I can't unread. I don't think the anxiety is the cause of the symptoms. I've also made my swallowing become "manual" rather than automatic now, because I've focussed on it so much. Luckily I've not yet had any problem drinking or eating, it just feels really tight and wrong sometimes, although swallowing saliva is usually worse. I don't think I've had tongue twitches yet but I have had more around my chin, cheek and neck recently.

[Yourboymj99]

Frightened, I know where your coming from. Our body's can do odd things sometimes, an anxious mind will no dought latch on and focus obsessively. Even something as simple and natural as breathing can feel off and labored once an anxious mind focuses on it. It becomes awkward and unnatural. Swollowing is no different. I have quite a bit of knowledge in regards to ALS and I can tell you I've never seen or heard of a case where bulbar presented in the way you describe. Regardless of what you've read remember these rare outlier cases are atypical and usually the patient has other issues unrelated prior to developing and being diagnosed with said illness which makes these reports misleading. You'll pull through so keep positive and stay away from Google unless it's unrelated to your worries.

Take care

[Frightened]

It seems to be getting worse unfortunately. Really tight throat when I woke up today and almost constantly feeling strangled and needing to swallow. Eating and drinking feels like it's getting more effort to swallow.

[Fishmanpa]

Are you getting help for your anxiety?

Positive thoughts

[Frightened]

No, but I don't think this is just anxiety. I'll be seeing my doctor soon to try to get a neuro referral.

[Frightened]

Today my tongue feels weird. Kind of like it's burnt by food, but I've not burnt it. It feels a bit clumsier and quivers a lot when stuck out too. Would sticking it out to check it a lot make it feel like this? Or could this be an early sign of weakness? Needless to say the throat is still so tight and pressured.

[Yourboymj99]

The feeling of your tongue being burnt would be a sensory feeling, which ALS would not cause. Burning feelings can be attributed to anxiety though and the fact that your focused on your tongue so much it's no surprise your experiencing these sensations. I don't know anyone who could hold their tongue completely still while continuing to hold it out. Your holding your tongue in an unnatural position which stresses it. Your also stressing the muscles in the throat by holding the tongue out checking it which could be contributing to the tight/pressured feeling a long with the anxiety. I know it's hard when your mind is spiraling and questioning everything. Try and relax though and don't self check.

Take care