Problems with ER?
 

Yesterday, I went to the ER for problems related to my myasthenia gravis. I was having a lot of trouble breathing, along with great difficulty walking, swallowing, more trouble with vision, and so forth. My internist said I should go to the ER.

It is hard, because my pulmonologist and neurologist are off for the weekend. They didn't do the tests they should have done. The only appropriate test they did was a breathing test (MIP) which I wasn't strong enough to do. I couldn't get the needle on the gauge to move, so the result was zero. Before, when that happened, they admitted me to ICU. Yesterday, because my doctors were not on call this weekend, they didn't. They said I'd have to wait until Monday, when I should call my doctors and see what they recommend. I have had similar problems before. I have a feeling I need to be admitted, but this is really difficult.

Have any of you run into problems like that when you were having myasthenic exacerbations? How do you work around these problems?

Thank you,
Erin

Oh, Erin, I am appalled by the treatment you received! People can have worse care during a weekend, but that is no excuse to not do what they can or to allow a patient to die!

The fact that you couldn't even get a MIP to register is frightening. How is your breathing now?

There are many things they could have done.

1. Check your O2. An O2 is deceptive. They have to do it while you are moving as well as sitting.
2. Do an arterial blood gas. If they see "hyperventilation," they often chalk it up to someone being "anxious." What it really means is that your gas exchange sucks due to not breathing well!
3. Compare your pulse to your "normal" pulse. It goes up when MG gets worse.
4. If you had been able to conjure up a MIP or MEP, they could have compared it to your normal. HOWEVER, at the point of -21 MIP, it's time to consider a BiPap or vent. A MG patient can stop breathing at that point.
5. They could have kept you overnight. They could have checked your O2 while you were sleeping. It always goes lower when we sleep.
6. They can do a basic neurological exam, rating your muscles on the scale of 0 to 5 (0 is worst, 5 is best).
7. Depending upon all of the above, they could also have given you oxygen.

I'm concerned that you are doing so poorly that you couldn't even breathe in.

After you get better, you should call your neuro and pulmy and have standing orders for you in the future. And by that I mean EXACTLY what anyone should do for you (i.e., IV Solu-Medrol, oxygen, etc.), such as what tests and what treatments.

Do you have an oximeter?

The problem is that we can become so weak so slowly that we might not notice how bad we are.

There is no excuse for what they did. You have a chart. They could have looked up what has been done before OR they could have gone on the internet and figured it the he!! out. Good grief, is there no standardized care in hospitals for MG patients? No protocols? Do they have actual medical degrees?!

I won't moan on with my own examples. It happens to a lot of MG patients. But MG patients can DIE if they don't receive the care they need.

If you are doing poorly, go back in (via an ambulance if you have to). What if you weren't able to speak? Any instructions from your doctors should be in your chart AND at home to bring with. Some MG patients have a recording for a 911 call in case they can't speak.

This is serious. You need care.

:grouphug:
Annie

Dear Annie,

Thanks for this very helpful message, although I'm very sorry to hear that apparently you also had some difficult ER situations in the past. My goodness. Why oh why? It is hard to understand.

I still feel bad today. I do have a home pulse oximeter. For reasons I don't understand, my readings are within an acceptable range, even though I feel terrible. However, if they do an ABG, that shows problems at times like these. As you mention, my readings also change when I walk or go to sleep at night.

It's more than the breathing. It's the severe leg weakness, difficulty walking, difficulty swallowing, increased difficulty with vision. I think some other form of treatment is needed.

The idea of having standard orders is intriguing. I wonder if they would consider that? I will ask them. It really makes me both sad and frustrated to think of this happening to other MG patients as well as me. We need better care for MG patients.

Thank you again for your message, Annie.

With appreciation,
Erin

What is your definition of an "acceptable range" for O2? It might not be correct.

This is one of my favorite book quotes.

“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.”

Decompensate means that muscles are FAILING.

Both oxygen saturation and ABGs can be deceptive. That's why a clinical exam is so essential. Any hospital doctor SHOULD be schooled in how to do a neuro exam. They test the muscles and rate them from 0 to 5 (zero the worst, 5 the best). They list is as, for example, 3/5.

I should add that to the list.

If you are that bad, you need help. You need to be in an ICU.

Most doctors offices have people on call. They can easily call your neuro's office and get someone on call to put in orders for you. Heck, you could call them! This is so silly.

Maybe instead of ER it should be the "LR," or Lazy Room. I often call it the "E-Aren't" Room.

Here are some PDFs for you.

I'm very concerned about you. You need more care. There is no way to predict how bad MG will become or how quickly.

Don't take "no" for an answer. You could always ask them if they want you to die. :cool:

:grouphug:
Annie

Dear Annie,

Thanks for the information. Regarding high CO2 levels, yes, they have sometimes made the comment that I must be anxious when I was not. Then another doctor set them right usually.

It is a problem, because the neurologist who is working at the hospital this weekend does not believe that I have MG. I have encountered this doctor before. My test results are negative somehow, but I have all of the symptoms, and I respond to Mestinon and treatment. My neurologist believes I have MG, along with my other doctors. However, the neurologist on call at the hospital will not treat me. He requires positive test results. So I guess I just have to try to get through today and wait for tomorrow morning. I don't know what else to do at the moment. On Monday, my doctors will return, and hopefully they can come up with a game plan.

Thanks again,
Erin

Well, I hope that neurologist likes lawyers because he's setting himself up for a huge lawsuit if you tank on his watch.

I'm not kidding. He has already put himself in jeopardy.

The more important issue is that you are doing poorly and don't have adequate care. If your neurologist and pulmonologist (they work together in a hospital setting and you need both to have orders) put in orders for care when you have an exacerbation or crisis, other doctors HAVE TO abide by those orders. Otherwise, the hospital is also in legal jeopardy.

Good grief! This is ridiculous.

No one can "fake" the tests results (i.e., ABG) of a crisis. No other disease, except for LEMS and a CMS, has fatigable muscle weakness.

I can't remember. Have they tested your IgG? There are other antibodies and mutations they are finding for MG. Seronegative means nothing. MG is a clinical diagnosis that is backed up with tests.

What else can we do to help?

Your life is potentially on the line here and you aren't doing well.

This is what you can do. Sleep. Stay hydrated. Eat good food. Sleep. Sleep a lot. Stay cool. Don't do ANYTHING. Stay off of the computer. And dial 911 if you get worse!!!

:hug:
Annie

I so understand your sufferingx
 

I have very similar problems to you. My breathing is laboured. I'm on oxygen. Sometimes it feels as if my diaphragm is not working. I have general muscle weakness and have to use two sticks to walk. I have severe speech impairment where my face muscles are hardly working. The worst is my breathing. Yet my myasthenia tests have proved negative. My breathing tests were declared null as I couldn't move the needle. I also have breath shudder. I have to take mobile oxygen with me when I go out. I just know I shall die in my sleep, even though I use oxygen at night, as my breathing is worsening. I really feel my diaphragm is not pumping my lungs. I've just had a MRI brain scan because the neurologist thinks I might have had a brain stroke!!! I just wanted to sympathise with you and tell you to stay your ground. Ask for oxygen, it helps a little. These people must take you seriously. It's a scary place to be when you are too weak to breathe.

Caprice, I'm very sorry you are having such severe health issues. Thank you for supporting Erin!

It hardly matters why someone is weak and cannot breathe. An ER is obligated to assess and treat what is going on.

This lack of care is unacceptable.

Annie

Thanks so much, Annie. Hopefully this will all work out. I'll call them first thing in the morning, and hopefully the doctors will have a good suggestion about what to do next.

I appreciate your kindness and support so much. I am resting today, for sure.

Sending best wishes your way, too!

Take care,
Erin

:hug:

I just thought I'd post an update to say that I'm still here! This is a confusing situation. I saw my neurologist yesterday. My doctors have been talking with each other. It seems like the consensus is that they think I am sick enough to warrant being in the hospital, but they don't know what to do to treat me right now. My doctor moved up my next IVIG treatment to the start of next week and she is increasing the frequency of the infusions. She increased the frequency of my Mestinon again. We talked about starting prednisone, but unfortunately I don't do well with prednisone. She is going to contact the neuromuscular specialists at the local teaching hospital, where I went previously. She'll find out if they will see me again, and maybe they can do more investigation or make further recommendations. So that is where things stand at the moment.

Anyway, thanks again for everyone's kindness, caring, and support. One step at a time, I guess.

Take care,
Erin

Erin, That is what they often say, "I don't know what to do for you" or "I don't want to do anything to hurt you." They're already afraid of legal ramifications. I can't tell you how many times I've encountered that for a variety of medical situations.

Don't say anything about their "fears" or legalities! Focus on what you need. Tell them you are scared and don't want to wait for meds, since MG can tank quickly and without warning. Tell them that you want to be in the hospital for testing, oxygen, and IVIG. Well, who ever "wants" to be in a hospital, but you know what I mean!

If that's what you want!

In a hospital setting, they can do IVIG and oxygen if necessary. They can do the list that I wrote. It's important to document your condition right now, by doing ABGs, etc. Why? You do need some proof that this isn't psychosomatic. Not that you are that, but that's what they often do when they can't "figure out" what's going on with a patient or there is no solid proof.

Well, there is proof, but it doesn't fit their MG algorithm.

MG is not a simple disease. And new antibodies are being found all the time. And mutations. They can rerun the LEMS stuff. And do CMS tests. They should be very thorough.

I have a theory that some people with MG have less circulating antibodies and that they are more "tissue bound." It has to do with the modulating antibodies and how they work. AChR binding and modulating antibodies have different characteristics.

The important thing is to have improvement of your condition. The worse MG becomes, the longer it takes to recover.

You could also ask them what other condition has fatigable weakness that responds to Mestinon and IVIG. Sometimes you have to point out the obvious to doctors!

How much did/does your MG fluctuate? What were your first symptoms? I think even you need to write down the history of your MG, to know for sure in your mind the condition of your own body. It might help to counteract this nonsense that you're getting.

When I had my crisis, I was 2/5 muscle strength. I could barely walk, breathe, or open my eyes. I couldn't squeeze the urgent care doc's fingers at all. My O2 was dipping into the 70s. My sleeping O2 was 66! My average MIP was -24, lowest -17. But the doctors didn't put me in the ICU or give me steroids or anything other than oxygen for FOUR days.

Why? They hadn't put my diagnostic notes into the computer. They only had the notes of a total jerk neuro who said that I wanted to be sick (malingerer) for SSDI!!! So they ignored the reality and hard cold facts in front of them in favor of a GodDoctor.

It was only when I was being walked down a short hallway (in bad condition), when I said to the neuro on call there, "It's disappointing to have a crisis when I had just gotten up to 6 miles on my recumbent bike (at a snail's pace)." He literally screamed, "We're doing steroids!" So, until I said that, he thought I was a malingerer who wanted to be sick for money. I guess I wanted to stop breathing for money then, too.

Doctors are odd little ducks. Well, schools of sharks. They follow the leader and do what they're told. That is the reality many of us face who have no or little evidence. But that's why MG is a clinical diagnosis backed up with tests, not backed down with negative ones. A negative proves nothing.

Resting only improves someone with MG if they are mild to moderate. Even then, it might not. You are beyond that point. You need more care.

I hope you get it and soon!

Annie

Maybe, in a hospital setting, plasmapheresis could be an option for you. It works more quickly to bring about overall improvement. It has saved me time and again when nothing else worked.

Out with the old!!!!!!!!!!!!
 

In with the new. Dear Erin, and Caprice, sure looks like you are getting sub-sub par treatment at best. Why don't you dump the physicians who have been treating(?) you? Looks to me that you can't do worse than what you both have currently. If a Dr. isn't helping you, he is hurting you.... Are you afraid to change??? ..... Please get to someone who knows what they are doing. Inaction could lead to dire consequences..... ...patrick

Annie, I'm so sorry to hear what happened to you with your prior care in the hospital. Goodness gracious! These things shouldn't happen. It's just shocking.

I am sorry I am slow to respond, but just haven't been feeling well. I've been trying to see what I can do to speed up the appointment at the teaching hospital. I am still working on it, but their Neuromuscular Diseases clinic is quite busy. We'll see what happens.

Take care,
Erin

Dear Caprice,

Our stories do sound rather similar. I'm so sorry to hear all that you've been going through! Are you in the U.K.? My pulmonologist ordered a non-invasive ventilator for me to use at home. It is like a fancy BiPAP machine. It helps me breathe at night, and I can also use it during the day when I am having a particularly bad time breathing. I do not use supplementary oxygen, but I understand that you can add oxygen to these machines. It sounds like you could really benefit from such a machine. As you say, it really is frightening when it feels as though you can't breathe. It's scary at any time, but particularly overnight. If you have a pulmonologist, try asking them about this, and if you might be eligible for it. It does take a little bit to get accustomed to it, but it has helped me and I know it helps others, too.

Please take good care of yourself!

Thinking of you,
ErinBear :hug:

Hi Limpy,

Thanks, yes, I have wondered with about plasmapheresis in the past few weeks. I am receiving IVIG currently. I imagine they are reluctant to do plasmapheresis, because it would wipe the IVIG out of my system. Up until the last couple of treatments the IVIG was working beautifully for me. I don't know what changed. They don't seem to be considering plasmapheresis at the moment. They want me to continue with the IVIG.

Take care,
Erin

Dear Patrick,

Thanks for your note. My current doctors actually are quite good, and I'm not eager to dump them. However, we do need some extra input, which is why they want me to go back to the local teaching hospital for more advice. Hopefully they can help.

Take care,
ErinBear

Hi Erin,
If the Ivig is no longer helping, perhaps you need to switch to another therapy. It's too dangerous to not be able to breathe adequately. I know. Been there, done that.
Unfortunately, Ivig did not turn me around when I was in a crisis, but plasmapheresis did.

Some doctors have adopted a concept in stubborn cases of performing a series of plasmapheresis followed by Ivig. That way you can get the benefit of both. The next round of plasmapheresis takes out the Ivig, but then it is immediately replaced.

Hope you get some help soon.