[Lily7]

I have read the threads regarding choking and inability to swallow -- and I now realize that can be an urgent problem.

My question is more about understanding what is happening to my throat on a less urgent level. My neck and throat feel like -- what I remember as the how the beginning of a bad cold feels, tight, deep ache, like you have swollen glands -- but I don't have a red Throat or swollen glands. Just these a hit feelings. Are these feelings from small scale muscle weakness or spasms? It happens mostly in the evening and I makes me generally feel miserable.

Also along this line, sometime while eating, when I swallow it feels like my food suddenly turns square and won't go down. It is not stuck in my throat but feels like it is stuck on the way to the stomach. Sometimes this radiates to a really big pain. I stop eating, walk around for a few minutes and When I can I swallow some pepto and that seems to calm things down a lot.

So what is going on in your experience? Should this be explained to Neuro doc or GP doc? How would you describe it as I think my rambling paragraphs above would make a doctors eyes glaze over?
Advice and Input is welcome.

[JerzyBoy]

I can only speak for myself and I've only had symptoms for less than 3 months....
My swallowing issues are very scary. Let's say I take a bite of a roll with butter, I chew it and swallow it. Now to me, it feels like I swallowed it completely. I go to take the next bite and swallow, only it doesn't go anywhere. The previous food is just stuck 1/2 way down my throat. While eating, I have to keep going through the swallowing procedure a few times before I go to my next bite. But I don't feel anything until it clogs up and then I can't breath. I've had 3 incidents where I was unable to swallow the food and also unable to choke the food up. I went minutes without oxygen and used juice to eventually wash it down. The final time, a few days ago, it was a roll and instead of washing it down, it caused the roll to swell up. Needless to say, I went a while without breathing and I had to choke and choke and choke until it came flying out. I was home alone and very lucky. If you have a doctor treating you for MG, call them immediately if you even suspect you're having muscle weakness in your throat. I still am waiting for a specialist.

Originally Posted by Lily7

I have read the threads regarding choking and inability to swallow -- and I now realize that can be an urgent problem.

My question is more about understanding what is happening to my throat on a less urgent level. My neck and throat feel like -- what I remember as the how the beginning of a bad cold feels, tight, deep ache, like you have swollen glands -- but I don't have a red Throat or swollen glands. Just these a hit feelings. Are these feelings from small scale muscle weakness or spasms? It happens mostly in the evening and I makes me generally feel miserable.

Also along this line, sometime while eating, when I swallow it feels like my food suddenly turns square and won't go down. It is not stuck in my throat but feels like it is stuck on the way to the stomach. Sometimes this radiates to a really big pain. I stop eating, walk around for a few minutes and When I can I swallow some pepto and that seems to calm things down a lot.

So what is going on in your experience? Should this be explained to Neuro doc or GP doc? How would you describe it as I think my rambling paragraphs above would make a doctors eyes glaze over?
Advice and Input is welcome.

[Lily7]

Thank you JerzyBoy for your insight and information about what you go through. I read in another post that you are awaiting the appointment for the MG specialist -- long days those, and also that you have even more difficulty when you lay down flat. I was struggling a lot when laying down, I was trying to sleep all over the house in chairs and recliners, choking and, well, hate to say it, drooling. When I saw a pulmonary Doctor he evaluated me for sleeping disorders and said I needed a cPAP machine. Now I can sleep on my back and have no choking, etc. for the first time in over a year I sleep for more than a hour at a time. Getting some overall body rest sleeping has helped a lot.
Having said that, I am still struggling with the breathing, and the choking/swallowing that we are discussing. The pulmonary Doctor is doing further tests and may put me on an avap machine instead of a cpap. He said this would give my breathing muscles a better respite during the night and keep my co2 levels from getting too high.
It seems like it all started with my eyes, double vision, and is drifting downward in my body. Sigh.




QUOTE=JerzyBoy;1182497]I can only speak for myself and I've only had symptoms for less than an ...

[neutro]

Hi Lily7,
Swallowing problems are usually next to appear after drooping eyelids at the beginning of MG symptoms. Since not 2 MG are alike, these problems may take different forms with one thing in common, inability to get the food down in the proper duct. In my case, it started with lips problems to sip then difficulties to get liquids down, they were going up through my nose, not too bad with water, but more unpleasant with orange juice or chocolate...
Choking is quite fearful, as JerzyBoy described it. It happenend to me once and if I'm still here, I have to thank my wife who called an emergency ambulance and their quick response (15 min). An oxygen mask did the job and at one time, I contemplated the disponibility of an oxygen bottle at home, should this reoccur...
Maurice.

[bny806]

swallowing issues are definitely scary.. mine started with weak lips (unable to purse my lips or make a seal around a straw).. slurry speech too.. but i would choke on everything - solids and liquids.. I couldn't suck through a straw due to lip and throat weakness. and blowing my nose, i couldn't hold the seal in the back of my throat.. so it is really uncomfortable when I would attempt to blow it..
then it feels like my throat is collapsing.. almost like it is resting on my tongue or something.. when i was at my worst, the sound of my voice could hardly make it out past this "collapsed" portion, it was muffled and very nasally... throaty? just awful.. when I start to get sick, i feel pretty fatigued for a couple of days before, but also notice my nasally voice and swallowing get funny.. it's a warning sign for me!

[FREDH]

Originally Posted by Lily7

Thank you JerzyBoy for your insight and information about what you go through. I read in another post that you are awaiting the appointment for the MG specialist -- long days those, and also that you have even more difficulty when you lay down flat. I was struggling a lot when laying down, I was trying to sleep all over the house in chairs and recliners, choking and, well, hate to say it, drooling. When I saw a pulmonary Doctor he evaluated me for sleeping disorders and said I needed a cPAP machine. Now I can sleep on my back and have no choking, etc. for the first time in over a year I sleep for more than a hour at a time. Getting some overall body rest sleeping has helped a lot.
Having said that, I am still struggling with the breathing, and the choking/swallowing that we are discussing. The pulmonary Doctor is doing further tests and may put me on an avap machine instead of a cpap. He said this would give my breathing muscles a better respite during the night and keep my co2 levels from getting too high.
It seems like it all started with my eyes, double vision, and is drifting downward in my body. Sigh.




QUOTE=JerzyBoy;1182497]I can only speak for myself and I've only had symptoms for less than an ...

Lily7,
I just left the hospital after a crisis, and I might have a little insight to swallowing. 1st I had a Barium swallow and scope to the throat. There were no problems. For 2 more months, I told my wife that the meat she was buying at the local store must be poor quality. I have had MG for 7 years or so -on Mestinon. I had never had a crisis before.
All a once I went to lunch 1 day and couldn't drive back. Called the wife. She took me to the ER.
I knew I had been getting worse, just did not pay attention. I had a 4 plasmapherisis treatments and time in the intensive care.
I found out, that even though I couldn't tell, my MG was affecting my chewing and swallowing muscles. After my release last Friday, I have since ate the same things. Those steaks and etc were not tough at all ==It was me.
Maybe it might help to see if it is you, but you can't tell
FREDH
P.S. Maybe I will understand if it happens again

[Lily7]

Thank you all for telling me your insights and stories, it is helping me to understand.
I tend to doubt myself and think I am making a mountain out of a molehill. Just because my diagnosis is new, it makes me wonder if I am not reading MG in to every little thing that happens.
But from hearing from everyone, I am not alone in this puzzling world. The only sure thing is hindsight -- true. But I am hearing from you that are more experienced, that keeping a watchful eye is not a bad idea either.
Man this is not an easy thing is it...l

[huntress]

Been awhile since I last posted here on this group. I decided to visit today and saw this thread/post. From my own experience with MG, I have had since 2011. One of my biggest issues is with the bulbar area. Swallowing/speech/chewing and such. I can say from experience that it is one of the big things as to wrong swallowing could lead to aspiration of liquids and foods. I myself had a Crisis due to pneumonia and silent aspiration of liquids and foods. Which lead to me actually dying for a few seconds when both my lungs collapsed and I couldn't breath. I was in the hospital almost for a month. Plex was the only thing that brought my swallowing back. But now 2 almost 3 years later I am doing a bit better. My Neuro gives me IVIG when my swallowing starts to slow down. I know when you start to feel that you are swallowing wrong it is time to seek alternative treatment or a combo of treatments. I currently am taking Cyclosporine, getting IVIG once a month and taking 30mg Mestinon every 4 hours. I will say, chin tuck my speech pathologist taught me when swallowing gets difficult. I hope for everyone to be able to find the right treatments to help with swallowing as to it is VARY dangerous.