Swallowing and choking issues?
 

Quick question about swallowing difficulties. I wonder if anyone here has swallowing problems? I imagine others might. I am having more difficulty swallowing and choking, including choking on my own saliva. (Sorry, perhaps too much information, but it's a problem!) I reported it to a doctor last week, who prescribed a stomach-acid reducing medication, but this does not seem to be helping. I think it is the MG, and not a digestion issue.

One neurologist in the past said that there is nothing that can be done if you are choking on your own saliva. Is this true? It is a difficult thing.

Thanks so much,
Erin

Yes, that's one of my most stubborn issues. My difficulty swallowing comes and goes in intensity, but never completely clears up. Can be very scary at times. Eating and drinking when you're at your peak of strength helps a little, but I've never found a way to control saliva production, and sometimes it just catches you off guard.

Dysphasia is a symptom of mg and Lems, but you probably need to have other things ruled out in case it's from some other cause.

Are you guys on Mestinon? If so be careful not to OVERDOSE side effects can make it difficult to swallow and exescive SALIVATION they're the 2 most common signs of overdose.

An acid reducing medication for swallowing issues? Wow. Not very logical.

I'm concerned that you need help NOW. These guys are putting you off until you can have another appt, is that correct? From your symptoms, you need to have some IVIG in the hospital or some other form of treatment.

Nothing can be done if someone is choking on their own saliva? What are we in, the Dark Ages?

First of all, lowering your chin (not raising it) will help with swallowing. But if your MG is bad, only more treatments will help.

Are you waking up at night choking? Are you sleeping with your head propped up a bit? Are you staying cool-ish? Is the rest of your body weak?

A simple clinical evaluation will clue the doctors in.

One doctor had me sip on a small cup of water, one sip at a time. That's a useful test in MG, since we become worse the more we do. If you are unable to swallow at sip #1, that should clue them in as well!

Are you confident in the help you are receiving from these doctors?

No MGer's life should hinge on what might be done at some future appt. If you need help, seek it out right away.

Annie

Dear ErinBear...
 

Choking is not a good thing! ...Please find doctors who know what they are doing. Please find doctors who will be more attentive to your needs. Please fall out of love with your current medical team. If your doctors are not helping you, they are harming you.

Thanks so much to everyone for their replies. I'm really grateful! I see the local neurologist tomorrow, and I'll talk with her and get her advice. I see the specialist at the teaching hospital in about a week.

I'm sorry that others face swallowing issues, too, but it sounds like there must be things that can be done. That means the neurologist I saw in the past (not the current one) was incorrect when he said that. It's encouraging to think there may be something I can do. It does go up and down in intensity, and when my other symptoms are worse, that is worse also. I suppose that is logical.

I just want to wish everyone well out there who is dealing with MG. Keep on keeping on!

Take care,
Erin

I'm on mestinon, but don't have excess saliva. Mestinon helps me have 'some' saliva, at least during the day. Extremely dry mouth is a symptom of Lems.

My problem is more the 'handling' of whatever's in my mouth be it food, liquids or saliva. Sometimes things just don't work right.
When eating solid food, I can get to about the third bite, then muscles in my throat and under my tongue start aching and just stop working, but the same thing can happen with just one swallow of liquid.
I can take a swallow of something and it may or may not go down. Usually goes about halfway down my esophagus , then starts reversing when I'm having problems.
Sometimes everything works fine.
I've been looking for a solution for this for a long time now. I do have an electric bed now, so I crank it up when I take pills at night.

LEMS swallowing issues can be different than MG. Just wanted to clarify that.

I hope you're not still taking the acid reducing drug. We need our stomach acid. Contrary to what the commercials may have us think—that our stomachs are infernos, causing us imminent danger (since birth)—stomach acid reduces with age.

Those drugs can cause all sorts of deficiencies. And without enough good bacteria in your body (which you already have an issue with due to being immunosuppressed), you can have all sorts of infections. You can also be prone to allergic responses, inflammation, and a leaky gut.

I hope the appt. went well. If it did, you may be in the hospital. I honestly don't think you are receiving optimum care. I think you have well-intentioned doctors, ones you like, but that doesn't always equate to the best care.

MG is nothing to mess with. People do die from it, unfortunately.

Annie

Dear Annie,

Thanks for your message. I'm still here! I'm not in the hospital. I saw the neurologist on Wednesday, and my gastroenterologist today. Monday and Tuesday, I have IVIG infusions, so hopefully that will help. I'm trying to do my best.

Thursday, I will see the neuromuscular specialist at the teaching hospital, so that will be an important day. I have seen this physician in the past. But it is quite awkward, because he doesn't like the fact that I have had negative test results. He sent me away and told me not to return because I had no diagnosis and there was nothing to treat even if I was having symptoms. However, my doctors are unified that I need additional care and advice. They all want me to return anyway, and my local neurologist in particular raised a ruckus. She got me an urgent appointment there (usually it takes three months, so I wouldn't typically be seen until November, even though I am a returning patient). The hard thing is that I think one of these neuromuscular specialists needs to be brave and make a diagnosis based on symptoms, which I guess they really don't like doing. Either that, or they need to do some further testing. We've done all of the standard testing by now. I don't know how the tests come out negative, but I know at least one other person who has MG and had the same experience. So I know it is possible for a patient to have it anyway despite normal test results.

Then again, my neurologist said if it turns out that this isn't MG - if they did tests and came out with a different diagnosis or different name for the problem, it really didn't matter as long as we had a name for it and a treatment. That is correct also. She made a point to the clinic at the teaching hospital that I am quite sick and need treatment, and I will really have to do the same when I am there next week, she said.

Thanks to you and to everyone here for your kindness and support. I'm so grateful to you.

Take care,
Erin

Yes, keep on insisting. Forget the antacids. Some doctors are incredibly stupid. I complained to my GP that I had been aspirating liquids and solids and saliva. She said, "so, you are regurgitating a little stomach contents into your mouth?" WTF? Does a GP not know what aspirations are? I also have massive MG symptoms but have not flunked any MG tests. I'm on my third neuro, who finally has some sense. Mestinon helps A LOT! The only way I got that prescribed was by buying some illegally in Canada and telling the neuro, "do you want to be in charge of this trial or do you want me to go it on my own?"

Thanks for the encouragement, Mw40love. I'm sorry that you, too, are having trouble getting a diagnosis and are going through so much.

My gastroenterologist said he is sure that my choking issues are related to the neuromuscular problems. However, I do have GERD and other significant digestive issues. He thought it was worth trying the Protonix for a short time to see if it would help even a little. I'll stay on it for a few weeks, and if it has not helped in that time, I will stop.

I am glad that the Mestinon and prednisone are helping you, but I'm sorry you initially had to get the Mestinon from Canada. I hope you'll be able to get the medications and medical help you need! Thinking of you.

Take care,
Erin

Yesterday, I had my appointment at the teaching hospital. I wanted to report that the appointment went better than I expected, and I'm grateful. The neuromuscular specialist was concerned that I am doing so much worse than I was a year ago. He wants to repeat the EMG testing. I asked if that was a good idea, since repeated testing has always had negative results so far. He still wants to do another test. If that's negative, he wants to do a muscle biopsy. They also did respiratory testing while I was there, as I was having a lot of trouble breathing. The results were quite low, which is concerning. But I guess that is additional information for them. The doctor asked that I be sent out in a wheelchair.

It is good that he is willing to look into this further now, and hopefully we'll come up with a diagnosis and a better treatment plan. The hard thing is that this will take awhile (weeks? months?) although the specialist will do what he can to speed the appointments. It's also hard as this teaching hospital is not close to me, and transportation is difficult. But I hope we can figure out a better plan.

Thanks to everyone for their kindness and support. I really appreciate it.

Take care,
Erin

Geez, Erin, HOW LOW were your PFT numbers?

If a MIP or MEP is nearing even -30/+30, you have to have oxygen at the very least. Breathing always gets worse while sleeping and there's no way to know if you are hypoxic at night. That can lead to brain or heart damage, or damage to other tissues!

If they were really low, they should have admitted you. I'm serious!!! AND they should have run an arterial blood gas. Did they?

I am very concerned about you. Sometimes even neuros don't know everything about MG, or don't stop to think about things like stopping breathing at night!!!

I hope you will keep a phone by you at all times. I hope you don't live alone. Please take any and all precautions you need to, such as sleeping a lot and not doing very much.

You can't wait months for help.

:hug:
Annie

They did the MIP test three times, as they seem to do (does anybody improve as they go along?). I always do worse as they continue testing, so the scores were -4, -3, and -2. Usually when my scores have been that bad, I've been admitted to the ICU. But I guess he must not have thought it was bad enough for that. They did not do an ABG test. For reasons I don't understand, my pulse oximetry is usually pretty good, and maybe that's why he didn't take further action. But before, when they've done an ABG in circumstances like this, then they've noticed problems. It's all confusing. I don't understand it all.

I do have a non-invasive ventilator at home which I use at night, and I can use it during the day if things are bad. So that is a plus.

I am staying pretty quiet by necessity, as I just seem to be rather tired. I see my local neurologist again on Monday, and maybe she will have more suggestions. I do have a phone with me here, and I promise I am trying to be careful and thoughtful.

:hug:

Take care,
Erin

-4?! Why haven't you stopped breathing yet?

O2 saturation is not sensitive to what is going on with MG. It can be an indicator but it is not foolproof. That's why an ABG is necessary. Duh, doctors.

I'm sorry if it sounded as though I was lecturing. I've heard one too many stories lately about how people are tanking or dying due to MG. And it hasn't been due to the disease state but bad doctoring.

Makes me a bit angry.

Annie

LOL Yes, I stubbornly insist on continuing to breathe! I'm funny that way. :wink:

I feel a bit dumb, because I have yet to understand how the oximetry readings can be good, when I am having so much difficulty breathing. If they actually do an ABG, it usually shows problems. I am still on a learning curve with all of this. I need to try to do some more research online at some point to understand it. But I think it confuses most of the doctors, too, because they see the oximetry readings and say that I'm doing just fine. I suppose it is because they are unaccustomed to seeing MG patients.

I'm so sorry that you've been hearing stories of MG patients tanking or dying lately through...medical mismanagement? That shouldn't happen. There should be better education of doctors. I know MG is somewhat rare, but it isn't so rare that doctors don't need to be aware of it, and how to treat it.

Take care,
Erin