Ok, wow, I had no idea -30 was bad. They did one other test where I blew out all I could into the thing, but I can't remember the results, 175 or 1.75 or something like that? I had no idea this was bad. I know I am very bad off. I haven't had a shower in over a week and as it is my husband has to help me. I can't move. I barely touch the computer, I sleep at least 14 hours, I am incapacitated. my breathing does feel better but I'm not getting out of bed much at all. I cannot walk alone but for a few steps. I have never been so weak in my life. It hurts to type. I can barely talk.

My neuro has no admitting priviledges anywhere. I see him on Thursday. The ER doc freely admitted he knew nothing about MG but he ran my test results by the major medical center and they advised him. My hubby called the MDA clinic today and they said they would call back with appt. I will look and see if that hospital has an ER, they have a whole MDA clinic there. I can only count to 8 now but don't know what to do. How do you know when you are in crisis? What happens? I told the ER doc about the counting thing and he said I was counting slowly. I count like 1,2,3,4,... He asked if I ever had a Tensilonn test and I said no, I had positive blood test for AChR. He said, but you never had a Tensilon test? Because his ONLY experience with MG was doing one of those for diagnosis. HE was nice and would have transferred me to UMASS but didnt really think it was needed. I don't even know what neuro is going to do Thurs.

Oh and I had to cancel my IVIG yesterday and today and I NEVER EVER do that; i was too sick to get dressed and get in the cab. I NEVER cancel IVIG.

Well, Tracy, you know when you are in a crisis when you are as bad off as you are now. I didn't want to define it as a crisis because I didn't want to scare you. Not that you aren't already scared.

Your doctor's are supposed to know that too.

You couldn't squeeze that doctor's fingers. No muscle strength = a crisis.
Your MIP was -30. Below -40 is a crisis (usually).

As much as doctors want one, there is no "exact" algorithm for defining a crisis. What is one person's crisis is not another's. Yes, there are basic guidelines but each person is different.

Don't use counting as an example. Doctors are odd that way. Talk about not being able to do anything due to weakness, about not being able to breathe in or out. They are the ones who aren't doing what they should do, like arterial blood gases, FULL pulmonary function testing instead of bedside spirometry, overnight oximetery, etc.

Again, why no Mestinon prescription. That is something your neuro could've done today. Call them back and get one called in.

And a Tensilon test in your condition could make you worse. Duh, doctors.

How far away is the bigger hospital? How about an ambulance ride there? You need more help than the IVIG.

You have to look at your situation in very basic terms. If you don't get help, you could stop breathing and die. So I think it's time for help, no matter where you get it.

I am so sorry things are this bad. But don't give up hope! You are this bad because you've gone so long without sufficient treatment. Please don't wait for help.

Annie

And quit typing, okay?!!!! Just sit in a hospital bed and read, without holding what you're reading!

Holy cow, those articles are amazing. I thought I posted a reponse but I don't see it. Anyway the last one I will print out and bring next time. I'm in bad shape, can't move out of bed. No bath in over a week. Missed IVIG yesterday and today, too weak to go. I never miss IVIG.

I can't remember what else I was going to say.

Oh yeah not sure about my BP but my heart rate was 115 and pulse ox was 97.

I showed everything to my husband and had him read it. He said I can wait until my doctor's appt on Thursday. He said he's seen me exactly like this for years (sick with Lyme.) I said this is different, I've never been so weak it hurt to type or I couldn't even get off the couch without you helping me.

He said the last thing I need is to go to some ICU and get a bunch more tests and things. He was irritated as hell he had to bring me to the ER the other night. I'd asked him to bring me the night before and he refused. When I got discharged from the ER he said "that was a waste of time."

He feels all I need is to get on the Mestonin. In other words, if it inconveniences him, he wants no part of it. He's sick of having a sick wife and he downplays everything. EVERYTHING. He read all those articles and all he picked out is that a crisis is precipated by a respitory infection, and i don't have one. If I had bronchitis or something it would be worth going to the hospital but since I don't it would be just another waste of time.

Plus he is always taking my cell phone so I never have a phone in reach to even try and call the doctor. And he is always out in the garage tinkering around so he can't even hear me when I call him for help.

You weren't the waste of time. The doctor wasted YOUR time.

And an MG crisis can be precipitated by ANYTHING, like stress.

If your husband wants to have a wife who feels better, he needs to pitch in, have your back and tell these doctors to help you. Just my opinion.

Do you have a "land line" in the house? Stay close to it.

Maybe your husband is in denial, like lots of people who know someone with MG are. Does he realize that you are in seriously bad shape right now? ER doctors don't all understand MG, especially because they read about one paragraph about it in school. It's hard for people to watch their loved one change due to illness. It can be a hard thing to overcome.

Your husband may need educating too. There must be an MG expert who can do some plain talk to get him to understand.

Again, I'm sorry about all this.

While your husband may be 'sick' of your sickness - he also sounds controlling (evidenced by your statement about the cell phone). I am really sorry you have to contend with this at all - but especially at a time when you are so vulnerable.

Oh, he is more self centered and forgetful. He doesn't take it away from me, he takes it use it because he can never find his, then misplaces mine. I do need a landline in my room. I have a Life Alert by my bed. Tomorrow is my appt with Dr. Weiss, 2 hours each way, and he is always running about 2 hours behind, then the appt is an hour....and I heard my husband making plans! He has no intention on going! I take a medical taxi, so he figures I'm all set. No forethought given to the fact I'll be so sick I will need help, no any interest in going and hearing what the doctor has to say about all this?

I'm so used to this, so used to lying in bed alone all the time.....but yes, stress is most definitely my MAJOR trigger. We are always fighting. For instance, we got my son a laptop for Christmas and it doesn't charge up. Ri ght away did all the paperwork to return it, He just had to label it and send it out. He hasn't done it yet. I have asked him EVERY DAY since Christmas to bring it to UPS. We are going to lose $600 any day now. It is like this with everything, meanwhile he putters around with his manly project of the day and never does the important things, no matter how small they are.

Sorry to go off on a rant.

Tracy, Do you mean Dr. Allan Weiss in St. Petersburg, FL?

UPS will come to your house to pick things up. So will Fed-Ex.

Fighting is so not good for MG. It's not good for anyone or anything.

Controlling personalities do like to fight. And, if he is like that, they do it because they are insecure and don't like being wrong. It's more than that, they can't handle not being right. What they often do is "level" or "put down" everyone around them so they can feel good. I hope that's not the case for you.

I hope your appt. goes well. I do not like that you haven't gotten care since those antibody tests were run. IVIG alone is not enough for you, obviously. Let us know how it goes.

Annie