Originally Posted by AnnieB3

I'm so sorry you are not doing well. It can take awhile for Imuran to kick in. Did your doctors run the TPMT test? It's to make sure you have enough of an enzyme so that Imuran doesn't build up to toxic levels in your body. They are supposed to run that BEFORE giving you the drug.

http://www.brighthub.com/science/med...les/53768.aspx

Pred can make you initially worse before you get better too. Not all the time but it happens in some people.

Well, yes, oxygen would help. And it helps when doctors take facts and THINK about them and what they can do to help a patient.

For example, if your O2 is 94% while awake, what is it when you are sleeping? There, that's not a hard mental leap to take. Sorry, very sarcastic about doctors today. Muscles become weaker when you sleep. They should at least do an overnight oximetry. Do you have a pulmonologist? They usually order those, though any doctor can get it done. When my daytime O2 is 94%, my O2 while sleeping goes below the "magic" 88% cutoff. That's what many pulmys use as the point where a patient magically needs oxygen. Well, if you have MG, it's hard to predict from day to day or night to night what you might need. At the very least, they can give you a Bi-Pap to use.

Has anyone done an arterial blood gas measurement on you? Or a metabolic panel, looking at your CO2? Both look at your metabolism but both are useful to do.

This quote from an MG book describes why, even if all of the above looks bad, MG going downhill is deceptive on testing. The book is called "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Matthew N. Meriggioli, James F. Howard, Jr. and C. Michel Harper. It's on page 112, to be specific.



In 2005, I went from 93/94% O2 and dropped down to the low 80's in a couple of hours. That's how fast someone with MG can get worse. And the worse you get, the longer it takes to recover. I was literally in bed for a month before being able to do the simplest of things for myself, like getting a meal. And I easily went into an exacerbation a few months later. I'm not saying this to scare you but to make you aware of how easy you have to take things right now.

How often are you taking Mestinon and in what amounts? Has anyone discussed having Mestinon Syrup for this period when you are not doing well? The syrup kicks in faster. I'm on the syrup due to having no stomach acid. Pred can be hard on the stomach too, so it might help. 1 ml. of Syrup = 12 mg. of Mestinon. (5 ml. = 60 mg.) A conversation with your neurologist would be very useful, including what the max amount of Mestinon is you can take and if you can take it every three hours or what! Sometimes it helps to be on a consistent dose of Mestinon, every few hours around the clock, in order to get better. Then you could change the schedule again when you do get better. But you have to look out for a cholinergic situation when you might be getting too much if the other meds kick in.

They need to take your situation seriously. And they need to do everything they can to optimize your breathing. A lack of oxygen, whether that's while awake or sleeping, adversely affects everything in the body. Mainly the heart, brain and kidneys.

I hope you will ask them to further evaluate your situation. I know it is hard and scary to not feel well and not be able to breathe well. I hope you will take it as easy as you can. Do you have help at home? Sleep as much as you can, eat well and avoid all stress. Basically baby yourself.

I hope you improve soon.


Annie