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.


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.



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.

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