Hi everyone,
I have a question about swallowing. A little background first. I was diagnosed with myasthenia last year via tensilon test. My primary and continual complaint has been double vision. I do have some problems with a hoarse voice and my mouth gets tired when talking. All of these symptoms are intermittent and have various intensity. I also have had some neck and arm weakness, however I would say that my symptoms are mild at best.
I take 90mg of mestinon every 4 hours, but its effectiveness has waned over time. My question is this; does anyone find that after eating solids that the food doesn't all go down and requires multiple attempts. It seems that some food stays in the back of my throat.
I did have one episode of choking that resulted in a persistent cough for around 2 weeks without fever. This is unusual, I don't usually choke.
I'm not sure what to do about this. Suggestions are appreciated

Hi and welcome to the site.

You're describing a very common issue for those of us who have our throats effected by the condition. The best suggestion I can give you is to ask your GP to refer you to a speech therapist for a barrium swallow test (ewwww... just saying. ). They can see inside your throat and see what is happening when you swallow. They can then give you tricks to use that will help with the swallowing.

For example, when I'm experiencing these symptoms I need to tuck my chin and turn my head to the right when I swallow, this stretches the muscles out on the left side and forces the swallow to use the muscles on my right side (because my left side is effected more severely) and it also shuts the air tubes to the lungs so nothing gets aspirated. We cannot give you this kind of advice as we don't know which muscles are effected worse in your neck/throat... you really need tests done to determine this.

Cheers and best of luck figuring this out. Feel free to shout out any questions you have and there're lots of us around here who'll answer as best we can.

Brian.

Hi, Jeatak. Welcome.

I had to laugh when I read that! That's what MG is all about! It gets worse the more you do and better (relatively) with rest. Fatigability of muscles is what makes MG unique.

Are you sure you didn't aspirate something into your lungs, thereby getting pneumonia? Those kind of infections are hard to get rid of. Did they do a chest x-ray? You might still have an infection. Infections can make MG worse. Vicious cycle! Please see your primary doctor to make sure you didn't do that. Aspirating is actually a common thing to do when you have MG. You can have "walking" pneumonia. Are you short of breath at all? Have you been assessed for sleep apnea?

I think you need to talk to your neurologist. Obviously, Mestinon is not enough for you. You might have to change the spacing between doses and possibly go down a bit on the dose amount. Sometimes it's more important to have a consistent supply of Mestinon and not necessarily a huge dose. I am on 90 mg. every 3 hours but that's what works for me. Everyone is different. Don't change things until you talk this over with your neuro.

We have 640 skeletal muscles that MG antibodies can attack. That includes the esophageal/swallowing muscles. It can affect peristalsis, how food moves through the GI tract, too.

You may want to make sure you sip on some cold water between bites of food. Not too cold! Also, what Brian suggested about seeing a specialist for a swallow test is a very good idea.

Talking a lot will stress out the eating/swallowing muscles too. Crying too. So think about what muscles you are using during the day and, by the end of the day, they will be more weak!

I hope you can find some relief or better/more treatments. Good luck!

Annie