Louise, Thanks for clarifying that!

My dad was a vet and had good care as well.

Can you say what drugs he is on? There might be hidden contraindications, with foods as well. I would again say that he should have vitamins B12 and D checked, along with some other basic tests like thyroid, metabolic panel (electrolytes can fluctuate with some drugs, as can kidney and liver function), and a CBC. They might have already done the last two, but don't assume that.

Drugs are great. But sometimes an assessment of what is truly necessary is needed. Or in what doses.

You should get copies of everything that has been done, including ECGs, etc. Doctors don't always tell patients everything. And if he doesn't have a healthcare directive, or a healthcare power of attorney, one should be put into place so that they can speak for him. Even a wife should have that!

Those antidepressant drugs are often difficult to withdraw from. Paxil has had a lot of lawsuits due to that. What you need to do is to make sure that the pharmacy and all of his doctors have a complete drug list, especially for those trips to the ER/hospital or to a transitional care facility. A medical alert card and a bracelet would be important for him to have.

He might need to sleep sitting up sometimes. Collapse of the lung (atelectasis) can happen if someone is not breathing in deeply enough. That often happens at night. He, or you, may want to ask a pulmonologist about an incentive spirometer to help with monitoring deep breathing. And I say monitoring, because doing that too much while the chest wall muscles are weak can make breathing worse. A u-shaped neck pillow can help keep the head in place. I recommend a Sobakawa or buckwheat hull one.

A CPAP might not be the right machine for him. Did he begin that before or after the MG diagnosis? There is a new one now called an APAP, or alternating pressure. Please ask if he is on the right machine for his MG. Please tell him that he needs to use a machine every single night. He can't afford not to in his condition. But he needs a new assessment by pulmonology/sleep doctor.

Yes, professionals make mistakes. However, when someone has a potentially life-threatening illness such as MG, doctors and nurses need to double check details and have due diligence.

Have they checked his overnight oximetry? Do they know what his O2 is while sleeping? That could be part of the problem. Have they done an arterial blood gas? An echocardiogram?

His activity level right now is probably limited to PT (physical therapy). They need to make sure things are not too repetitive. Talking too much can cause the breathing muscles to become worse. When someone is in an exacerbation of MG or an MG crisis, they need to reduce the amount of activities they do to almost nothing (except keeping muscles from atrophying).

MG has a high learning curve. There are drugs that people with MG can't have or are relatively contraindicated. Has anyone checked the drugs he is on against that list? Home What if a drug is making his MG worse?

Stress, lack of sleep, hot weather, surgery, and a lot of other things can make MG worse.

What else can we help with? The goal is to stabilize him and to improve the overall condition of all muscles. I hope they are on the way to doing that!


Annie