Hi. I have not been diagnosed with MG, but sure have some kind of issues with Ach, it seems. I quit sweating, my diaphragm is weak, according to my pulmonologist, and some other things.

The question I have is, I have for about a year, not been able to sleep on my back. If I do, it slowly feels like I can't breathe. I can sleep on either side. I have had a slightly protruding right chest bone(in the front, down the middle) since i was a kid(now 50), but I now seem to have a "hump" in those bones from both sides in the upper middle of my chest.

With your thymoma, did you have trouble lying on your back? I even have problems sitting up straight in a chair--I tell the doctors that it feels like pressure in my chest. i have to sit in a somewhat reclining manner, but definitely not down on my back.

Sue, Have you had a sleep study done? I imagine that would be the best way to figure out why you are having trouble breathing on your back. I never sleep on my back due to my MG.

The thymus is really small and if you had a thymoma, unless it was huge, it would probably not cause a problem with breathing while on your back. In MG, it's the chest wall muscles that get weak that cause an inability to breathe well. In autonomic disorders, it can be many things that cause an inability to breathe.

Have they thought about sending you for autonomic testing, due to the inability to sweat, etc.? Have you been evaluated by endocrinology?

I don't know who told you that you have a "hump" in those bones but I think they need to be a bit more scientific and specific! Is it a bone spur? Some genetic thing? Can you pulmonologist answer those questions?!!!

I hope you get it all figured out.

Annie

Thanks. I had a sleep study, but never slept on my back. They had to wake me up and ask me to lay on my back for about 15 minutes. I guess everything looked okay for those 15 minutes. Normally, it is very uncomfortable and hard to breathe.

I'm sorry--that is my description of my "breast bone". No doctor has really looked at it. I have been to endos to look at all reasons for my symptoms, and have seen a few cardios and also had the dysautonomia testing. I do have standing issues.

Along with me noticing that Ach is something I seem to have an issue with, my pulmonologist mentioned it on my first visit. I then spoke up and told him I had been thinking about it too. Of course, he did some kind of lab test, but said everything came back normall.

I know what exactly you're talking about Sue.

It started out that I could not sleep on my left side, then it went straight to my whole back.

I had the sleep study when I experience the inability to sleep on my left side, and it showed nothing, because I absolutely refuse to sleep on my side.

My Theory:

I do not think its the thymoma that I have, which is 5.7 cm.

What I figured out, as someone without a medical degree, is that my muscles are weak aground the lungs. Plus, you apply the extra weigh on those muscles, when you rest, and you wake up feeling as if you're drowning.

Now, that I returned to taking Mestinon, I can sleep at night.



The following in an earlier post I listed the exact same symptom:



Fortunately, the tissue on the thymus had stop growing and it was benign. However, my NIGHTTIME breathing was getting worse, in that I was now no longer able to sleep on my left side or back for long periods of time, without feeling deprived of oxygen.


Long story short, he told me to resume taking Mestinon but keep the dosage low 90mg/a day, which remember at first worked wonders for me, giving me muscle strength. However, I was not able to remember whether it supported my breathing, since I pretty much slept on my right side to avoid an interruption in my sleep.


This time, the doctor wanted me to pay attention to whether the meds were allowing me to get a proper night's rest, and I must say they did, though there is slight blurriest in my vision from time to time.


I looked it up and blurred vision is a side effect, but I don't know whether I should stop taking the meds, because of that.


Anyway, I have a follow MRI in about four months to monitor the tissue on the thymus.


I want to know is whether or not I have MG?


The doctors have said it was hard to determine, because I only have weakness or symptoms on only one side.


After much thought, I think I must have weakness on my left side, because I literally felt as if the left lung wanting to expand but struggling and constricting, whenever I would recline on the sofa for about twenty minutes or so.


It felt as if the weight of my body reclining on the lung was too much for the muscles to support in that position. If I stood up, it was much better, but the pulmonary function test showed I had difficulty exhaling on two tests.


I don't know. I did know I had slight breathing concern while in an upright position, doing minimal activity. However, it was nothing compared to my nigh time sleeping on my left side.