Before I left my apartment to go to the ER, I knew I would not be able to articulate what was happening to me. I decided to type out an outline of all the details:

I have Myasthenia Gravis, and I am experiencing what is called a "Myasthenia Gravis Crises Event."

Myasthenia Gravis is an auto immune disorder. I am producing antibodies that are interfering with some of my voluntarily muscles.

THIS IS THE REASON THAT I CANNOT SPEAK. MY INTELLECT IS INTACT.

My symptoms include:

• Inability to speak
• Inhibited jaw, mouth, lip, and face muscles.
• My left eye is drooping
• I cannot swallow
• I cannot clear mucus from my throat -- cannot swallow, hack, or spit.
• Breathing is shallow and labored

I need to see a neurologist or ER doctor with knowledge of Myasthenia Gravis. This doctor should be familiar with IVIG - immune globulin infusion therapy.

The trigger factors for this MG crises include my Prednisone taper, the heat, and a stressful summer.

I believe the biggest factor is the taper. From a 60 mg daily Prednisone dose, I am currently down to a 7.5 dose each day (15 every other day) without the introduction of an immune suppressor at the beginning of the taper.

I had an appointment with my Dr. Dearlove at Stanford Neurology on Monday, and she increased the Prednisone doce to 60 mg every day and introduced Cellcept, an immune suppressor.

I was in MG remission all summer. I have not been taking much Mestinon during this period. It only treats MG symptoms, so one does not need it much in the absence of symptoms. When symptoms returned a week ago, I began taking Mestinon again.

I sent myself the outline to my cell phone via Email. I felt comforted (as far as possible) with the knowledge that I could let the ER know exactly what was happening. In a few minutes, my friend Sam came to take me to the hospital

I showed the ER nurse the outline. I handed her the phone. She held it for a moment, and then handed it back saying "Yes sir, that nice. Now can you tell me what is wrong with you?" I grunted loudly and pointed to the screen, at which point I noticed the nurse had accidentally deleted the Email. I grunted even louder, and she responded "Sir don't yell at me."

While this was going on, she was taking my blood pressure. My right arm became extremely painful, and I noticed the BP cuff was over 300, and it was not going down. She must have known. When I became agitated from the pain, she said "Sir if you quit struggling against it, it will go down."

My blood pressure at the time was 240/ over something. I did not see the other figure.

I was moved to the ER waiting room, but since I was making such loud, guttural noises trying to expel the mucus from my throat, they move me quickly into an examining room.

Except for an insurance issue, every thing went well from this point. On Friday night, Saturday morning, and Monday morning, I was told that my my insurance is ineligible. I had to sign self-pay papers, and there was talk of transferring me VMC, our county hospital.

This did add some stress, but I knew it was a mistake and that it would be resolved sometime on Monday. I even confirmed my last payment posted while at the ER.

In fairness, this nurse probably did not slow down my treatment. I had the notes from the Monday visit at Stanford, and it had enough information to point the ER doctor in the right direction.

I told Sam many times that a lot of doctors are unfamiliar with MG. During my examination, Sam tapped me on the shoulder at one point, saying that "the ER doctor does not have a clue what to do." I guess hearing it and see it are two different things. I also knew the ER doctor would find the right resources soon.

-Mark-

P.S.: I thought several times over the next 5 days what would have happened had I not been diagnosed before arriving at the ER. How long might it have taken for a diagnosis?

Mark, I'm sorry you had to go through a crisis and met with some obstacles to getting care.

I hope you don't mind if I make a few suggestions.

First, the next time you believe you are having a crisis, dial 911. Do not have someone drive you in. Minutes can make the difference between life or death at that point.

I think you should be evaluated by a cardiologist. Yes, BP can go up higher during a crisis, but don't assume that. A high BP over a long period of time can lower kidney function.

You might want "I CAN'T TALK RIGHT NOW" in caps!! I can't believe that nurse thought you were yelling at her.

I would make the description of MG very simple. MG makes skeletal muscles weak and can cause me to not swallow, move, or breathe well or at all.

You might also want to retype the list with other basics, such as them needing to do O2 saturation, arterial blood gas, breathing tests (if able), etc., and leave a copy of that list in your chart at the hospital.

It's great that you got care, but take it easy now! It can take a long time to recover from a crisis and the drugs may deceptively make you think that you are stronger than you really are.

Anyone else have any other suggestions?


Annie

Yes a medical alert bracelet or talisman as medics may not go through your wallet or pockets for a card but if you are unable to communicate an ID bracelet would alert them immediately.

I also have a document I carry with me, one in my Jeep and one online on Google docs as well as one on my phone, If I (or WHEN I) go to the er with a real hard time breathing or weak or any condition.

I open the document and hand them my phone.

It lists my conditions, medications, allergies, and if i have time symptoms.
I also list items and or drugs or tests I should not have with lambert Eaton,
It has helped a load of the doctors and the defiantly thank me for it when they finally enter the room.
This is a good idea for anyone to have with them..