Bulbar symptoms?

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Val

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Hello,
I came to the forum because I have a history of als anxiety. That said, I’ve had quite a plethora of neurological issues and even been tested for MS, so I “got used to” twitching and cramping. However this time there are new symptoms and they feel much more insidious.
For about two months now I’ve been having issues with swallowing. It started as a weird sensation of food stuck at the back of my throat and a perceived effort to push it down. At this stage I”m able to do that but I get a wet voice and sometimes a bit of throat clearing after eating as well as some small amount of water in my nose after drinking. When not eating or drinking there is a sensation of something in my throat (like phlegm) and I’m constantly swallowing. i’ve also woken up a couple of times from severe coughing. Then there throat spasms, tightnes, facial stiffness, cramps and twitching in areas around my mouth and tongue. Speech feels off as if it required more effort (early slurring?) I’m 38 y.o female. The EMG specialist I saw privately (she tested me the first time I had suspicions of als) refused to do the bulbar test on the grounds that I’m young and she doesn’t see any characteristic issues. So the question is are they typical? I’ve developed a severe food and drink anxiety and at the same time waiting for my neuro/EMG appointment makes me physically sick. How do you help yourself at this point? I can hardly eat and my metal state is deteriorating.
Thank you and looking forward to your responses.
 

KimT

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Hi Val,

I'm sorry you're going through all this trouble and the fear that comes with it.

You mentioned you were tested for MS. Were you diagnosed with MS? The reason I ask is that there are other autoimmune diseases where swallowing can be an issue. Just to name one Myasthenia Gravis. It's important that you work with qualified doctors to figure out what's going on. So did your neurologist suggest MS or did a rheumatologist?

Also, did you actually have an EMG, even if it wasn't the tongue area?

I know the wait is hard but they will get to the bottom of it. There are so many things that might cause swallowing issues including GERD.

When is your EMG appointment?
 

Val

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Hello Kim,
No, I was cleared of MS, and MG — I had an EMG and MRI — all came clear. This was 2 years ago. Since then I’ve had twitches and sensations that’ve learned to live with. The swallowing abnormality and tongue and face twitches started 2 months ago, I went to a private EMG specialist who had tested me 2 years ago and she dismissed these symptoms on the grounds of age and specific nature of ALS symptoms. Now I’m waiting for a neuro and a tongue EMG. I’m scared because while there are quite a lot of “other explanations” for lower limbs symptoms, the swallowing and speech symptom is seriously limited in good things that mimic ALS. And it’s absolutely horrible to be scared of eating and drinking.
Thank you for replying,
Val
 

lgelb

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Eating and drinking are obviously critical to your health, so if you are scared of these, I would try to see a speech language pathologist for a swallowing evaluation that might at least reassure you enough to keep up your nutrition. And have a blender for super rich smoothies so you can get the most out of every bit.

Perceived swallowing issues as you know are classically a feature of anxiety, and if you had unappreciated Covid or some other virus, that could certainly contribute, along with GERD and/or allergies.

I don't see ALS in the course you describe.
 

affected

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Definitely see a speech pathologist as they really specialise in the whole range of things that can affect your swallowing, not just ALS so will be really helpful in directing you and helping you with strategies.
 
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