Hi, wvfox. I'm sorry you had to wait so long to get help.

It sounds to me like you're having some serious side effects from the Prednisone. You really need to talk to a doctor about it. Plus, you need someone to assess your blood pressure and see if you are having any pitting edema. With all of that swelling, you have to deal with the Pred with a doctor right away.

Having steroid shots while on Pred is not a good idea! Again, call your neurologist. Pred isn't for everyone and can cause many problems. Also, you are more open to infections while on Pred. If anyone gets sick, your chance of getting sick increases. Has your nephew had chicken pox? You shouldn't be exposed to viruses and bacteria as much as is possible.

Vitamin D3 and calcium are essential for the body and will NOT make your MG worse. Omega 3's are good prostaglandins which you can get from eating fish, olive oil and walnuts, for example. Pred is an anti-prostaglandin and it can reduce the gel coating of your stomach, leaving it more vulnerable to things like spicy foods, coffee, etc. So having good prostaglandins can help. These are sensible things to do for yourself that most good doctor will recommend!

Double vision, like you describe, is normal for MG. If you close one eye, it should go away. When muscles around the eye are weaker, the eyes can't both focus on objects the same way.

You also need more help with your MG. Do you have someone to take you to an expert? It might be a good idea to stay for a day or two to rest.

Don't hesitate going to an ER. I don't like the way you're describing the tightness around your trunk/chest wall muscles. Have you ever had an ECG? If you can get a peak flow meter, it can at least show you how you're breathing out. It doesn't matter if you're having trouble breathing in or out, if you are, you need to get to the ER.

I'm so sorry you aren't getting the support you need at home either. Maybe if you tell your husband that your disease is kind of like a car that doesn't have enough "gas" he might get it. We don't have enough muscle gas (acetylcholine) getting to our muscles. When that gas runs out, our muscles will sputter and won't "go" anymore. The difference between a person and a car is that a car won't DIE if it doesn't get enough gas!!!

I'm sorry for your nephew too. But it's very wonderful of you to look after him. The problem is that right now you're the one who needs looking after!

What else can we help with? I think you just need more care and the "right" kind of care. It doesn't appear that anyone is looking at whether the treatment regimen is working the best for you or not. I really hope you can find the right balance for you.

In addition to what Kathie said about a good, comfy chair, you can sleep in a recliner if your breathing is worse. A U-shaped pillow around your neck will greatly help to rest your neck/head muscles too.

Hang in there! MG can be managed but not if someone isn't helping! Call your neurologist and get some help.


Annie