a woman with myasthenia gravis has a throat lump

My Strange and Uncommon Symptoms with Myasthenia Gravis

Last updated: April 2023

Most of us have the classic symptoms you could read in a textbook about myasthenia gravis. But, what about those strange symptoms no one or few have heard about or experienced?

What about those symptoms that you discuss with your doctors and neurologist and they tend to look at you like you are an alien from outer space? Well, I have a couple ... and yes, they’ve happened to me.

One is an altered or different sound and pitch to my voice. I also have a neck muscle that seems like it constricts, or causes what feels like a lump on either side of my esophagus (or throat).

Constricting neck muscles

Usually, the lump is more prominent on the right side, but it occurs on both sides. Because I haven’t found a doctor that will even investigate the symptom as of yet, I am not sure which set of muscles it involves. I think it could be either the superior belly of the omohyoid, sternohyoid, or sternocleidomastoid muscles.

This is what happens: The muscle will feel like it has contracted or created a lump on the side of my throat. When I press on it with my fingers, it feels like it "pops" and releases the muscle, even if only temporarily.

It isn’t painful, but when it occurs, I have difficulty swallowing, talking, and sometimes breathing becomes a little strained. My husband tells me when this happens, my voice also changes and becomes high-pitched.

No one knows what I'm describing

When one of my nieces, Brenda, visited me a year or so after my diagnosis and I had her feel it. She, like me, is a nurse. She had never before encountered anything like that and was a little freaked out about it!

This symptom never occurred before any of the other symptoms began or before my diagnosis, but yet, here it is. As I said, it causes no pain, but it is uncomfortable and I do have to be very careful when pressing on the muscle.

The carotid artery is just behind it and if I also press on it, I have a little flutter with my heart and it makes me dizzy and light-headed. I try really hard not to do that.

Not only does this symptom seem weird and strange, but I also have yet to find anyone that has a clue what I’m describing. I’m hoping to find others that have also experienced this, along with other weird myasthenia gravis symptoms.

Changing voice pitch

I’ve also noticed I have a great deal of difficulty singing like I used to. Not only can I usually not carry a note more than about 8 counts, but sometimes my pitch is also affected.

I know a person’s voice changes as they get older and we tend to not sing as well as we used to, but sometimes, my voice is right where it needs to be and other times, I’m off-key.

I’m not talking about the occasional sour note, but an entire phrase or song. Then, out of nowhere, my voice returns. This is another symptom I got around the same time as my myasthenia gravis symptoms arose.

I hope this information reaches others experiencing the same symptoms. Maybe then, we can get them added to the list of myasthenia gravis symptoms.

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