[draggin']

So, Im still not doing well. Ended up with more rounds of pred plus another three medrol IVs and just started my third week of Imuran. So far, only my eye lids have improved. I can barely walk with walker or cane, only my thumbs and index fingers are working on my hands and I feel so short of breath. It really bothers me when the mestinon wears off. My ribs even hurt. But here's my question:
I had to go today for my bloodwork and I asked the nurse to check my pulse ox. I thought maybe I could get some oxygen for the house that would help when its bad, but the lowest it got was 94. It still doesnt make sense to me. Even though, I remember the Neuro telling me in the hospital that it would read normal because the problem is actually my muscles not wanting to move....but still....it feels like I need air! Would oxygen help?

[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.

“Arterial blood gas measurements are a relatively
insensitive measure of impending respiratory
decompensation in MG since the initial changes are
consistent with hyperventilation and are usually
attributed to anxiety. By the time CO2 retention
occurs, the respiratory muscles have already
begun to decompensate.”

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

[Annie59]

AnnieB3 I have a question about this:
“Arterial blood gas measurements are a relatively
insensitive measure of impending respiratory
decompensation in MG since the initial changes are
consistent with hyperventilation and are usually
attributed to anxiety. "

Are you saying it can look like hyperventilation/anxiety? The reason I ask is that when I saw my pulmo last he insisted I try to lay flat and breath. I was far far worse that day and worse even more as I had just finished talking to him. I had a very strong reaction. I was admittedly breathing fast and hard and realize it looked bad but all I wanted to do was sit the H*** up so I could breath easier. I felt like I was being suffocated. He started to tell me try to calm down in a kind way but my body was doin its own thing struggling to breath?

Hope it is OK to post this here. Not meaning to hijack this thread.

Annie59

[Juanitad]

When I am having problems with my lungs, there is no way I can lay flat and breathe. It feels like I am fighting all the gravity in the world to make my lungs expand and take in air. It is a problem with the respitory muscles that don't work!! Why don't docs get that? Yes, I do tend to panic when I am laid flat on my back when I am having trouble breathing, because I can't breathe!!

Sorry you're having this problem, but hopefully this will help!

[draggin']

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.

“Arterial blood gas measurements are a relatively
insensitive measure of impending respiratory
decompensation in MG since the initial changes are
consistent with hyperventilation and are usually
attributed to anxiety. By the time CO2 retention
occurs, the respiratory muscles have already
begun to decompensate.”

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

Thanks for the info. My Dr's nurse called back and said that the doctor said my O2 seems ok and that I just need to rest and let the Imuran start to work. Now, since increasing my dose from 50 to 100, 4 days ago, Ive been very queezy and headache about 5 hrs after dose. Last night I vomited and tonight...well...so far...so so.