Hi. I'm sorry you are having to deal with so much at once. My first impression when I read your post was that if you have lupus, you need to be seen by a rheumatologist to be diagnosed and treated. My second thought was that you should also see a pulmonologist to get full pulmonary function tests done, including MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). MIP and MEP are specific to neuromuscular weakness and can be a very good indication of how you are doing. So it's good to have a very good pulmonologist and have baseline tests done.

Yes, you can have lupus and MG. I have known a few people who do. It's not fair but it happens! Both diseases are manageable but you need VERY good doctors, especially a rheumie and neuro who are willing to talk back and forth about your care. Missy is right, Dr. Barohn is one of the best. If you can get in to see him, then do!!! And you want the best if you do have two autoimmune diseases.

I volunteered to the local lupus foundation for ten years so I know a lot about it. It's not a very fun disease. Don't be scared though! How it affects you can be different than how it affects others. And some of the drugs used for lupus are used for MG too. Once you get an actual diagnosis, just do LOTS of reading.

There can be false positive AChR antibody tests but they don't happen very often. I would bet that Dr. Barohn would redo them just to be sure. And probably do a Single Fiber EMG as well.

Your neuro should know about MG and MAO's. If not, Dr. Barohn definitely will. It's just that some drugs may be relatively contraindicated to take while taking MAO's. Don't worry! A good neuro will help you with all this.

As far as the breathing goes, I would recommend two things. One, get a peak flow meter (or a pulmonologist can give you one for free). It's not as accurate as doing breathing tests in an office but can give you an idea how you are breathing OUT. Two, if you can afford it, you may want to consider (after you are diagnosed with MG) getting a pulse oximeter. I've had one for four years now and it has been invaluable. It shows what your oxygenation is. I use it to see how I'm doing while exercising. It came in handy in 2005 when I was doing very badly and had an MG crisis. My stats were 94% and were not recovering to their usual 98%. I have a Nonin Sportstat, which is very good.

If you are having trouble breathing in, you should probably see someone right away. Because you are new to all this, you probably can't tell yet what is a mild, moderate or severe problem yet. Or maybe you can! It's better to check with a pulmonologist though to know for sure. My pulmy has standing orders for when I am doing worse to have tests done.

And not to add to your doctor load or anything but if you haven't already seen a cardiologist, it's not a bad idea. Lupus, if you have that, can affect the heart. So can MG due to breathing issues. And if you have SIADH (syndrome of inappropriate antidiuretic hormone), then you'll probably need an endocrinologist too!!! Sorry, but lupus patients often have to have a variety of doctors since lupus affects a variety of different systems in the body. It just sounds like you are retaining fluids and that really is in the realm of endocrinologists.

I hope that helps somewhat. I guess you can't really do anything until you know for sure what is going on. Get those good doctors!!! That will help tremendously. And then learn as much as you can. But don't worry. There are lots of treatment options now and other ways you can help yourself (like getting enough sleep!). And when it gets warm outside, stay the heck out of the sun. Sun makes lupus worse and heat makes MG worse.

Annie