Debra, I'm so sorry you got that bad. The inability to lift your leg up was a huge clue. It's easy to deny that you are getting worse. I wouldn't recommend a crisis for anyone with MG but it is a very good learning experience!

There are few diseases that cause a fatiguing of muscles. MG is the major culprit. Sometimes a diagnosis of MG is done in an ER with a clinical exam, an ice pack test and response to treatments (according to PubMed sources).

The one thing they did wrong, besides not giving you copies of ALL your tests, was not giving you plasmapheresis. That is the "standard of care" for an MG crisis (besides being in the ICU). Sure, it might be different for those who know that, for example, IVIG works better than plasma BUT that is what they should have done - antibodies or no antibodies. If you got better on that, it's a done deal (usually). Neuros will sometimes use plasmapheresis to diagnose a patient when they are antibody negative and their SFEMG is negative or borderline.

MG can temporarily get weaker on steroids. That happened to me during my crisis, besides having steroid insanity. It took an entire month of bed rest for me to get better. And a couple months later, I had an exacerbation where I had to rest again for 10 days. This is the time when you have to be very careful about not doing anything. You can trick yourself into thinking that you are over it and okay. Your MG is now unstable and it needs lots of TLC.

You need to make sure you are taking calcium and Vitamin D while you are on Pred and after. It doesn't matter if you are only on it a short time. Flax or fish oil isn't a bad idea either.

I cannot recommend highly enough that you get yourself a darn good pulmonologist. They can check how your breathing is doing, by either breathing tests and/or arterial blood gases (ABG). Did the do ABG's on you? Do you know what your oxygen saturation was? They can make sure you are improving, along with your neuro, and put in orders for breathing tests like MIP and MEP if you get an exacerbation.

The wisdom in making absolutely certain you have MG is that you don't want immunosuppression (if you have to have that) if you don't have MG. It looks pretty crystal clear to me that you have it but I know I would want to know for certain. They sure as heck are going to take you seriously now. Once you scare a doctor, they don't "pooh-pooh" you again! I guess doctors in the UK don't scare easily, eh Rach?!

Please get copies of everything, including doctor notes from your trip in. Part of this learning about a disease is learning what to look for and what happens when you have a crisis.

You cannot go out in the heat right now. Period. In fact, stay as "neutral" in temps as you can. I have fans in my bedroom and bathroom (for while I dry my hair); they really help. You can't do anything besides take care of yourself. If you do "normal stuff (like drying your hair)," chances are that your recovery time will be much longer. And if you start to get worse on the reduction of Pred, you have to notify your neuro immediately.

And if you start to "crash" again, dial 911. DO NOT have someone drive you. EMT's are equipped to help you and will put you to the head of the line in the ER. Those triage nurses are sometimes completely worthless and may not understand what an MG crisis is!

I know this is a lot to take in. It's rather unnerving really. As long as you listen to your body, take it easy and REST, you should be okay. If you have the SFEMG, which I would recommend, make sure you are off of Pred for awhile and it's often recommended to be off of Mestinon. HOWEVER, you need to follow your neuro's lead on this and only you both can decide if you are stable enough to do that. Because, as Sue said, those drugs can make the test look normal. But being off of drugs right now will just put you back in the hospital.

That was nice, Sue, but there a LOT of people here who can give great advice on a crisis, MG diagnosis, etc. Including you. And different perspectives are excellent to have, especially since MG is so different for each of us.

I hope you will recover soon. Use this time for fun things like movies and music. No singing or dancing though!!! And I had my exacerbation after only talking, so be careful about that too.


Annie