Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I've had quite the weekend. It started Friday night, when I was unable to get a handle on my breathing. I was breathing really fast, and couldn't seem to slow it down any. The more I focused on it, the worse it got. I felt like I couldn't get enough air. There were a few times that I would stop breathing for a bit, but my lungs seemed to kick back on, so luckily I didn't pass out.
I wound up going to the hospital. I was pretty scared, and with being all alone, with my mother only able to watch, I didn't feel safe staying home like this. My mother knows nothing about MG, and the more I explain to her, it seems like it overwhelms her and she stops listening. I'm not sure how I'm going to handle that yet, but hopefully we can sort it out.
So I get there, hooked up on oxygen, and I still have this labored feeling about my breathing. It almost felt like something heavy was on top of my chest. They did blood work, an oxygen gas test, and couldn't find anything wrong with me. I explained to them that I had MG, but it seemed that it didn't matter much. I was so weak when I got in there, that all the tests they were asking me to do strength wise I was failing. The doctor's decided instead of listening to me, to continue working that I had lung issues.
So x-rays, and a radioactive test to see how they were working concluded that my lungs don't inflate as they should, but there isn't anything they can do about it. I'm at 38% function, which to me sucks. I used to be 40% a few years ago, so I guess it is going downhill some. After all those tests came back negative, they admitted me into the hospital to observe me.
For 8 hours, I saw no one, and was in my own room there. I felt so isolated. My breathing started to regulate itself after 8-9 hours, so by the time someone actually did come check on me, I told them I wanted to leave. If I wanted to be ignored, I could at least be home with my mother, eat, and sleep in a comfortable bed.
So I got home last night, and have since been really depressed about it all. I fear to see what the medical bill will be, as I only got medicare, and it appears that all my medical records I thought I had are gone. I talked to my ex-wife, and found out she either threw them away, or didn't keep records, so I sense that I got more tests to fail before they will try to help me. I'm one of those lucky ones that test negative for the antibody tests, and EMG's as well. So yay me.
I'm hoping to start feeling better soon, but I've been extremely weak since Friday, and I'm not sure why. I'm really worried that I've been doing too much, but I normally recover in a day or so. I just pray that I don't have any more breathing problems. I'm terrified that I'm going to stop breathing while I sleep, so I'm not sleeping well now either. Never realized how much my ex did for me, until she isn't here anymore. I guess now I can understand why she left. She just couldn't do this anymore.
So to those that do have issues like this, do you have any advice? Is there anyway to make sure I keep breathing at night when I sleep? Is it within the realm of MG to have such lung/breathing issues? I know MG can cause your lungs to stop working right, but do they normally have such a decreased function? Thanks for the advice as always, and thanks for reading my story. It really helps to let it out. It makes me not feel so alone.
I wound up going to the hospital. I was pretty scared, and with being all alone, with my mother only able to watch, I didn't feel safe staying home like this. My mother knows nothing about MG, and the more I explain to her, it seems like it overwhelms her and she stops listening. I'm not sure how I'm going to handle that yet, but hopefully we can sort it out.
So I get there, hooked up on oxygen, and I still have this labored feeling about my breathing. It almost felt like something heavy was on top of my chest. They did blood work, an oxygen gas test, and couldn't find anything wrong with me. I explained to them that I had MG, but it seemed that it didn't matter much. I was so weak when I got in there, that all the tests they were asking me to do strength wise I was failing. The doctor's decided instead of listening to me, to continue working that I had lung issues.
So x-rays, and a radioactive test to see how they were working concluded that my lungs don't inflate as they should, but there isn't anything they can do about it. I'm at 38% function, which to me sucks. I used to be 40% a few years ago, so I guess it is going downhill some. After all those tests came back negative, they admitted me into the hospital to observe me.
For 8 hours, I saw no one, and was in my own room there. I felt so isolated. My breathing started to regulate itself after 8-9 hours, so by the time someone actually did come check on me, I told them I wanted to leave. If I wanted to be ignored, I could at least be home with my mother, eat, and sleep in a comfortable bed.
So I got home last night, and have since been really depressed about it all. I fear to see what the medical bill will be, as I only got medicare, and it appears that all my medical records I thought I had are gone. I talked to my ex-wife, and found out she either threw them away, or didn't keep records, so I sense that I got more tests to fail before they will try to help me. I'm one of those lucky ones that test negative for the antibody tests, and EMG's as well. So yay me.
I'm hoping to start feeling better soon, but I've been extremely weak since Friday, and I'm not sure why. I'm really worried that I've been doing too much, but I normally recover in a day or so. I just pray that I don't have any more breathing problems. I'm terrified that I'm going to stop breathing while I sleep, so I'm not sleeping well now either. Never realized how much my ex did for me, until she isn't here anymore. I guess now I can understand why she left. She just couldn't do this anymore.
So to those that do have issues like this, do you have any advice? Is there anyway to make sure I keep breathing at night when I sleep? Is it within the realm of MG to have such lung/breathing issues? I know MG can cause your lungs to stop working right, but do they normally have such a decreased function? Thanks for the advice as always, and thanks for reading my story. It really helps to let it out. It makes me not feel so alone.
Do u have a neuro who u see regularly, who you can follow up with about this event?
Hang in there...you're going to make it and we're all cheering you on.
Not sure if there are heat issues in your area but that can exacerbate MG problems. So if you thought you were you were pushing it a little it heat could turn that into pushing it a lot.
Know that your MG family is here for you.
Kimber
Were all here for you :)
Take care,
Kim
It might of been the heat, but I'm not really sure. I stay inside almost all the time, and I go from air-conditioned housing to a air-conditioned car, and on the day in question, into 3 air-conditioned buildings, and then back home. I'm guessing the 5 minutes I was outside was enough to set it off, but honestly I'm not sure. I didn't really have any other heat related stuff, aside from my MG going crazy.
When I do see a doctor, I will ask about respiratory therapy. I would love to breathe a bit better, and to get the sharp pain that happens when I take a deep breath away. I've gotten used to it over the years, and just breathe pretty shallowly, but it would be nice to have the air to sing again, or at best, just to be able to talk for me then 10 seconds without running out of air. I didn't realize there was therapy that could be done, so thanks so much Kimber for mentioning it.
That must be hard to manage with a 3 year old momo. Us adults can at least know what is going on, and feel things and express them better then a young one. I am glad to hear that she doesn't have breathing issues, but I bet it is still scary for both of you. I wish her and you the best with it.
It is sad how we as a MG patients have to suffer for lack of understanding of our condition. When we can't breath is because our muscles are weak, so the typical tests might be normal and still we might stop breathing. Can't they just learn that?
Once I see a Neuro who specializes in MG care, I'm going to be getting a medical flash drive to keep all my records on. So if and when I have to go to the ER again, I can hand them that, and say this is my MG info, now help me instead of trying to disprove that I have it.
It is amazing how these people are DR's, if you ask me. No compassion at all for the disabled and sick.
As far as the breathing stuff goes, I normally do the single breath test when I'm in distress. I also take showers to open up my airways again, and lay down and relax. Most of the time, the shower and rest help, and if it doesn't, I do the breathing stuff. Sadly on Friday, that didn't even help, and I got scared. After seeing folks like Curt suffer with it, I guess I'm a bit more worried about my breathing now then I was before I knew how severe it can get.
Just to say it is extremely important that you get that neuro appt moved forward and that you make a connection with someone who has experience with treating MG! Is there any way you could contact your previous neuro for his records so at least you have something on hand?
The things that help me most with my breathing are resting in an upright position so that the diaphragm doesn't have to work against all the abdominal contents pushing up against it as it does in lying flat. I usually open the window for some air but in heat probably better to stay cool in AC. Don't talk, that usually makes my breathing much worse! Try drinking something cold. Distract yourself from your breathing by listening to music and watching telly! I find that the more I concentrate on it the worse it becomes and the panic can be overwhelming and counter-productive!It also sometimes helps you to fall asleep and rest because as much as we fear sleep it is hugely restorative and important for us myasthenics. Take a mestinon if you are on any and if things don't improve you should really get medical assistance as you did! So sorry you had such a bad experience!
I sleep on a BIPAP ventilator at night now but really can relate to what you are saying and your fear! Try to get that appt as soon as possible and let us know how you are doing Tesinato!!!
Hugs Ange