i need to vent and get some ideas/advice. I have been working with my neuro regarding getting some plasmapheresis treatments. Apparently even if I go inpatient, the doctor is concerned that the insurace my not cover it. From what I understand is that my symptoms are not bad enough to have this. He did say to go to the ER if I was having probs breathing & swallowing.

So last night, I got double vision then I had such weakness that my legs would not support me whatsoever, I couldn't move my arms, and my neck just flopped. On top of that I was gasping for air. So I went into the ER in town (only 4 miles away), but really wish I could have gotten to my neuro a few hundred miles away... but I knew that wasn't wise.

So I got to the ER, and they knew nothing about MG. They tell me if my pulmonary tests get any worse, they will put me in the ICU and start plasa pheresis. If i start aspirating my food, they will put me in as well. I'm annoyed.... I am so weak, can hardly walk, short of breath, and totally exhausted, but they want me to get worse first?

Any thoughts? I contacted my neuroloist and they said thaat I could get transferred to them, but... i don't want to go through all of this evaluation stuff just to get sent home.

Good place to vent-

Good thing you went to the ER. Here is my criteria for needing assistance at the ER, or any hospital.

If your continually resting, sleeping and symptoms are getting worse. If you are sleeping and getting better symptom wise that means (in my eyes) that the person should just stay in bed and sleep the symptoms away.

Though like i said if you are not able to sleep the symptoms away you should definitely get to the ER, as it sounds like you did.

You need to have your neuro contact the ER there, or the residents dealing with your case so that you may receive the appropriate care. As you know MG is very hard to understand, and not many doctors know about it, especially PA's who you are seeing in the ER for the majority.

As it stands right now, short of breath doesnt seem like something they would do plasmapheresis for..usually. But stranger things have happened. If your Negative Inspratory Force, (NIF) is less than 20, you should be getting help breathing from a Bi-PAP. Under 10, i would assume an intubation would be in order, as it was for me.

Your neuro can instruct the hospital what to do for you.

Hope your doing okay

Try not to get stressed out, it'll just make things worse. I'm sorry you are not getting the care you so obviously need.

First of all, what meds are you on?

Your doctors should not wait until MG puts you into a full blown crisis where you cannot breathe! This waiting until things get the worst they can get is dangerous.

Did they do an arterial blood gas? A chest x-ray? Any tests at all? Did they check your O2 saturation while you were sitting AND walking around? And your pulse, since the pulse will initially go up before a crisis because the heart is working harder to get your tissues oxygen. And someone not breathing well can get atelectasis, anywhere from a small to large area of the lung that is not fully inflating. It can be dangerous.

I've attached some articles about this topic below. You may want to bring them with you the next time you go to the ER, which I suspect will be very soon. You sound like you are in the midst of a crisis. Noninvasive ventilation (Bi-Pap) is often used for patients on the edge of a crisis or in a crisis or post-crisis. And, sometimes, it is smartly used by pulmonologists who realize that MG patients who are weak during the day may not be able to breathe well at night because our muscles get weaker when we sleep.

How did they evaluate your "shortness of breath?" Did they do full pulmonary function tests, including MIP and MEP? Do you have copies of what they did? If not, get them all! That's what they are supposed to do. You can't tell by looking at an MG patient how short of breath they are! Arterial blood gases need to be done too. And if they show "hyperventilation" that does not mean you are anxious, it means your muscles are already decompensating and you are on the verge of a full blown crisis.

An MG crisis can happen without warning. Well, that's rather silly since there are certainly always huge clues of it. But you never know how quickly you will get worse or how bad you'll get. Which is why you should be in the hospital.

I have to disagree with you on a couple of points, Tyson. First, a MIP, maximum inspiratory pressure, (or NIF, negative inspiratory force) of -20 usually means intubation. Granted, they have to take into consideration things like someone's "normal" MIP but that's pretty darn low and action should be taken. At the VERY least, oxygen should be given. MEP (maximum expiratory pressure) of +40 or less is bad too. For example, my normal MIP is in the -80's. If I go crashing down to the -20's to -40's, I'm in trouble.

And shortness of breathe IS something they would do plasmapheresis for. It doesn't matter what group of muscles is tanking, action is necessary for them not to get worse. If breathing muscles are the only ones going south, which does happen, it is not something to be ignored. It also gives a patient a false sense of "I'm okay" when, in fact, they're not.

No, it is most definitely not wise to go miles away!!! AND if you get so bad that you can't move or breathe or swallow again, you MUST dial 911. You get far better care that way, unfortunately. Believe me, been there done that so many times - and not only with MG - that it's scary what they don't do.

Do you have a pulmonologist? They are invaluable. If I'm getting worse, I know I can get breathing tests immediately and admitted if need be. Or get more drugs too. Neurologists don't specifically deal with the breathing end, so having both specialty doctors is essential with this disease.

You need to keep taking this seriously, even if doctors don't. Go ahead and ask the ER doctor if they'd like you to die in their care (or at home). Ask them if they know the guidelines for an MG crisis. Ask if they would perhaps like you to inform them of what they are. This is seriously whack.

I hope you will get help soon. You don't sound well.

Annie

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 96 views)
	MGRespiratoryComplications.pdf (95.6 KB, 110 views)
	MIPMEP.pdf (192.8 KB, 168 views)
	NonInvasiveVentilation.pdf (76.9 KB, 116 views)

Thanks Annie,

That was extremely helpful This whole experience is a disaster. The doctor ordered neuro checks every 4 hours... since i got to my room, 24 hours ago, only one nurse did one check. Two RN's yesterday didn't even listen to my lungs. They aren't doing all the vitals they should... which would be interesting to see what they are charting - good idea about getting a copy of the chart.

They did draw blood in ER, and jst drew for another cbc & bmp a few minutes ago. No blood gases have been done. In the ER I did a NIF?? (I think) and I was one or two points away for going into the ICU.... which I somehow have to get into in order to get some pheresis treatments or IVIG, or something.

I am currently taking Mestinon 60 mg q6hs (they won't give me any more than that, so about 2 hours between each dose I'm miserable), Robinul 1mg prn q6h, and prednisone 20. So really all they did was add on the prednisone.

My PFT results were great when I had it 2 weeks ago, but then I wasn't short of breath, gasping for air. Now they have been checking something at the bedside (NIF and something else) every 4 hours... which.. i have actually had done 3 times in the last 24 hours.

My concern is that they will send me home today. None of my respiratory tests are abnormal, and that seems to be what they are basing things on completely as far as treatment. The RN last night listened to my lungs (the 1st one to do so in 12 hours) and said that they definitely sound diminished because I'm not getting good breaths in.... but yet I'm okay?

I failed my bedside swallow study last night, and have to have a video swallow this morning. The Speech Therapist that was there was astounded that they have been making me take all my meds without crushing them or anything. I told her that I gag every single one down.

It will be very interesting what the neurologist says today. I am in no shape to go home, but if they aren't going to do something, my dog can do just as good of job of monitoring me.

I do not want to go through this again.

Sounds like a very frustrating situation.

As long as you are receiving prednisone in a near-crisis state, you should be in the hospital. Prednisone can initially make your illness worse and you should be closely monitored. They will also probably want to gradually increase the dose. 20 mg. is a relatively low dose.

On the bright side, if you have a good response to prednisone you can do much better within a few weeks. Some people even experience improvement within the first week.

One of the problems with myasthenia is that there are no clear guidelines as to how patients should be treated or monitored. If you ask six neurologists you will get six different opinions. I believe that this is also why health care plans are not obliged to give any treatment unless it is a clear-cut life or death situation.

Doesn't sound like- It sounds as though they understand the severity of your condition, but probably not doing a good job in explaining what is going on to you. I think you should try and discuss with them what their plan is, what are they expecting and let them know your concerns.

Thanks Annie,
My nurse keeps telling me, that if my breathing gets worse, to cal her right away. I called her an hour and twenty minutes ago... she paged the doctor, and no doctor has come yet. My breathing is shallow and its difficult to get a decent breath. Should I be concerned?
Today, I will get some answers. The nurses hate coming in here, because they don't have answers, so they hear most of my venting.