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.

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

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.