Tracy, That’s great that you got diagnosed. Did you have positive Acetylcholine receptor antibodies? MuSK antibodies?

Do you think the IVIG has helped the MG at all? It sounds like it has. Have they tried subcutaneous IVIG (i.e., Hizentra) for you?

I’m sorry you’ve had so many infectious type diseases. Have you seen an immunologist? It might be a good idea for them to check out things like IgA, IgE, IgG levels, etc.

Are you on any pain meds? Some drugs can make MG worse, like Neurontin. That’s often the pain med of choice for neuropathies. Neurontin/Gabeptentin can not only make MG worse but it has been shown to bring it on or cause it. There are many drugs that have the potential to make MG worse, including antibiotics. Vicodin can make MG much worse, including breathing. You have to be very careful with drugs like that when you are bad off.

Have you checked out the MGFA (Myasthenia Gravis Foundation of America) website? www.myasthenia.org

Have you ever had your vitamin B12 checked? Even if you don’t have a deficiency, B12 has been found to help improve peripheral nerve damage when taken in higher doses (studies have been done all over the world). It helps things like neuropathies, shingles and Bell's Palsy, to name a few.

What I am concerned about is how bad off you are. With MG, the worse you get, the longer it can take to improve. Because you have been so bad for so long – without meds – that may be why you are in such bad shape. What MG drugs are you on? Mestinon? I would be cautious about doing any immunosuppression given how many infections you have had. Steroids are fraught with problems and are very hard to ever get off of.

There are three reasons to be in an ER:

1. When you can’t swallow.
2. When you can’t breathe in or out well.
3. When you are overall weak, such as when you can’t get out of a chair.

And when I mean be in an ER, I mean dial 911. Why? Because you cannot tell how bad MG will get or how fast. It is very scary, as you’ve already experienced, and the best place for you is in a hospital. They need to put you in the ICU so that they can monitor your heart and oxygenation. Normally, they do plasmapheresis for someone in an MG crisis. Plus oxygen and/or Bi-Pap to help your chest wall muscles take a bit of a break.

Do not be shy about doing this. To me, it sounds like you don’t have enough meds right now. You don’t have to rely only on your neuro. Neuros and pulmonologists work together in a hospital to help an MG patient. I will bet that you could call your pulmonology office first thing in the morning and get in that day if you can’t breathe well. Of course, it’s a fine line between doing that and being in a hospital.

A pulmonologist needs to run MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) because those readings reflect most closely how someone with a neuromuscular disease is doing. They can also do an arterial blood gas to see how bad off you are. One more test a pulmonologist can do is an overnight oximetry. You may be hypoxic at night and not even know it. They often use 88% as the lowest a person can be before they get oxygen and/or a Bi-Pap. You could do a sleep study too but right now you seem to need more urgent attention.

Sharp chest pains are not normal. Did they even once check your oximetry when you were doing all of that cardiac testing? Investing in an oximeter has meant the world to me. It made me aware of what my “normal” is and when I’m doing worse. No, that’s not a substitute for instincts or other “signs” of MG worsening but it is a useful too. They have a Nonin GO2 oximeter now that is much cheaper.

Did they even check a D-Dimer on you to make sure, after all that bedrest, that you don’t have a blood clot? The other thing that can cause chest pain, if they don’t do an esophageal echocardiogram, is bacterial endocarditis. Our friend had that and they couldn’t see it on regular echos.

Since you are so bad off right now, you may need to scale way back on activities. You may have done some already, since you are basically not doing anything. Use paper dishes. Don’t stand, only sit or lie down. Don’t talk if you don’t have to. This is the time for you to be very serious about getting better. Maintenance is key with MG. You don’t want a lot of “hills and valleys” with MG. The more steady you can keep things the better. And right now, you sound like you are way down in the valley of weakness!

And what is this BS about “my neuro WON’T see me” until after the swallow study? Does he want to see you in court? It doesn’t sound like you can wait, damn it. What is a swallow study going to do anyway? Prove you can’t swallow. Why do they need more proof? I know that a swallow study can be useful but it shows weakness in one moment in time. The next day those muscles that affect swallowing can get worse. MG can affect any of your 640 skeletal muscles at any time and to varying degrees. Besides, you need help NOW.

Seriously, if you need to go to an ER to get help, then do so. MG can kill if it is not sufficiently treated. No, it doesn’t happen a lot but it can if you don’t slow way down and get some help. I’m not saying that to scare you! But newbies tend to think they can “push themselves,” even a little. You can’t afford to do that right now. A positive attitude is great but it can get you in trouble, make you think you can do whatever you put your mind to. MG pushes back and sometimes when you least expect it.

And if you haven’t done this already, please do. Write down all your personal information, emergency contacts, insurance info, doctor names and numbers and meds and amounts on a medical alert card. It doesn’t have to be fancy, it just has to be done!!!

There’s a huge learning curve with MG. Take some time to let it all sink in. I’m concerned that your doctors are not taking this seriously enough. So you take it easy, get them to help you and do what you can. You CAN get better but it’s going to take some time. Hang in there!

Everyone here is very knowledgeable and super nice. Ask anything, they'll be here for you!

Annie