I have a question. This is something I have never understood. My breathing is worse, and has been worsening for maybe a week. When I check with my home pulse oximeter, the readings are still within a good range, often very good. But I am struggling to breathe. I gather this is possible, but does anybody have an explanation for it? I am using my home non-invasive ventilator more frequently for now, and it is helping. I am still going to the hospital for plasmapheresis regularly and keeping up with my medications, so I am trying to do what I can. I don't know why I am doing worse. Thanks for any information you can share.

Take care,
Erin

Go in and be checked out! What if you have a PE (pulmonary embolism)? Or something else serious? The ONLY way to know is to be checked out. Please don't wait.


Annie

Hi AnnieB3,

I think it is probably my myasthenia gravis. I had plasmapheresis treatment today. Even though the nurses were concerned about me being weaker and having more trouble breathing (etc.), they did not recommend that I go to the ER right now. The treatment did help a bit for now. I still don't understand, but I guess there are a lot of things I don't understand about myasthenia gravis. I'm not sure what will happen, and yes, I will go to the ER in the days ahead if it seems necessary, I promise.

Take care,
Erin

Let me see if I can explain this. I asked my pulmonologist the same question. He said that my lungs process the air I receive normally so my pulse ox will stay in the normal range. The problem with my breathing is that my diaphragm is weak and therefore my lungs are having difficulty pumping. (Just in case you thought like I did that lungs are muscles, they are not. They are organs and the diaphragm is the muscle that pumps the lungs) Your pulse ox will remain in the normal range until your diaphragm basically stops working. This happened to me in ICU. My pulse ox was 96, but I was struggling to breathe. The nurses didn't realize what was happening and thought I was having a panic attack. They called my docs on-call partner who ordered Atavan (which should never be given to a patient with MG) Within 30 minutes my pulse ox dropped to 36 and I had to be intubated. So, long story short, with mg, your pulse ox will be fine until your diaphragm stops working and then it will drop very fast. Don't let anyone tell you that since your pulse ox is fine, your mg is fine. Hope this helps.

Dear Juanitad,

Thank you so much for this, although I'm so sorry for what happened to you. I've had the same thing happen to me, where the doctors told me I must be suffering from anxiety and I should try taking Ativan in the hospital. It just made it all worse! I'm so sorry you landed in the ICU and had to be intubated. That's really terrible. It seems like there is so much confusion and misunderstanding about how to treat myasthenia gravis. I understand it is a somewhat uncommon disease, but at least where I live, it seems most of the doctors still encounter it. I'm not their only patient. They should have better training in how to deal with it safely.

I did know some of this, that it is my diaphragm and chest wall muscles that are causing my breathing difficulty rather than my lungs. But thank you for your explanation, which really helps. I send lots of good wishes your way, and I hope you are doing as well as possible.

Take care,
Erin

If medical professionals don't want to think, they should take the Ativan! That is a classic thing they do to patients, so that patients will leave the staff alone while they are busy. And you know, we woman are prone to being full of anxiety . . .

Doctors who don't know what to do are prone to:

. . . then drugs.

A simple arterial blood gas would be a smart thing for doctors to do for you, Erin! Since O2 doesn't drop until late in the game, they could just find out WHY your body seems oxygen-starved. Hmm, that's just too logical.

You must just be depressed (kidding).

You might want to talk to a primary doctor or cardiologist about an echocardiogram, if you haven't had one lately. And a D-Dimer to make sure you don't have a PE. My best friend had a PE after IVIG. And they found out that she had APS (antiphospholipid antibody syndrome). Shortness of breath can be from things other than MG.

You have to advocate for yourself, even though you don't feel well. Work the system. This is just nuts! I'm sorry that you were both on the receiving end of this lack of thinking.


Annie

The best thing I ever did was request that my pulmonary guy test me laying down/sitting down/standing up.
If there is a decrease of 15% from sitting to laying down, there is respiratory muscle weakness, Always caused by a neurological disorder.

Violet, I'm so sorry your daughter is doing poorly. I have no idea what they based their decision on to ventilate. Ativan is often necessary for intubated patients. What we were discussing is how professionals sometimes throw Ativan at anxious patients, ones who don't need the drug.

The ER doctors can adjust the Ativan dose downward to help, OR switch to a BiPAP IF that is not a dangerous thing to do. Is she on oxygen as well?.

I've attached some articles for you. If you are not in the hands of MG experts or neurologists who know how to manage a crisis, they might benefit from some of this information.

I'm not a doctor, so I can't advise you on anything. They sound as though they are trying everything to help your daughter. It's rough to watch a child go through something like this. But if she isn't breathing well, intubation will help her to relax those chest wall muscles, giving them time to become stronger.

What precipitated her crisis, if I might ask?

I encourage you to do a new thread, so that more people will see your question. Please don't forget to take care of yourself as well!

Annie

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 36 views)
	NonInvasiveVentilation.pdf (76.9 KB, 31 views)
	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 29 views)

I found that a pulse ox meter was little help in gauging my true condition in oncoming crisis. The only thing that really seems to be a real home gauge is how far you can count aloud on your deepest breath. If you are like me, a talkative singer, lung capacities will also differ. In my own case, by the time I was only able to count to 15, quickly, only the upper quarters of my lungs were functioning. I have heard 12 is the real "worry point" from a doctor's view (ie emergency action necessary). Yesterday I could count to 24, but was finding the cpap to be a relief and was flattened otherwise. On a "good" day, I can count to 50. Through all of this, the good ol' home pulse ox will show maybe 96%. Take that as you will, but BE careful.