Hello;

My wife has had MG since the summer of 2000 (she's now 51 years old). She's had her ups and downs over the years but the last few years it settled into a place where it stabilized. By this I mean the disease quit fluctuating so much and she found a mixture of drugs that helped control it (was on cellcept, prednizone, and mestinon). She's an elementary school teacher and has, fortunately for her (she loves to teach), been able to keep working (although there were a few times she wasn't sure if she'd be able to).

However, at the end of April of this year she ended up having gall bladder surgery (immediately after intense pain started) and a few days after coming home her MG started acting up in a big way. Long story short, she ended up in the ICU for 15 days, 8 of which were on a ventilator. She spent a total of 18 days in the hospital, then 19 more in an acute care rehab getting her strength back to where she could walk and take care of herself again. At first, they thought the problem was precipitated by the surgery. However, it turns out she had CMV (a virus) and now we all think it may have existed prior to the surgery (she was having fevers prior to the surgery). Anyway, while in the hospital she was in pretty bad shape (pneumonia on top of the virus, very high fevers spiking, respiratory failure, etc.) and the doctors weren't sure if she was even going to make it. Turns out CMV is a virus 50-85% of adults over 40 have latent in their system. However, for most of us you can't even tell you have it; but if you're immunocompromised it can be deadly.

Thankfully, she pulled through and has almost fully recovered (to her pre-incident self). Which leads me to my question...

Has anyone had an MG crisis without other factors precipitating the crisis? I'm assuming the answer is yes and that it's common, but I thought I'd ask the experts here that live with MG day-to-day.

As an fyi, a 5 day course of IVIG is what finally (about a week after administered) seem to help pull her out of the crisis, along with a gazillion doses of antibiotics (mostly Ganciclovir, which is specific for CMV). And she's currently on an every other week regiment of IVIG.

Thanks,
Kevin

Hi, Kevin. Welcome. Your wife is really lucky that they figured out what caused her crisis. Immunosuppression can bring on all kinds of "latent" viruses and bacteria in the body. After I had steroids, I got a staph infection, had an antibiotic and then got clostridium difficile (secondary infection of the GI tract).

With all those antibiotics, I hope she is taking acidophilus! She needs to keep as many good bacteria in her body to avoid the secondary kind of infections. The kind that is refrigerated is often best to take. If she's uncertain of what to take, she can ask her primary doctor.

Almost anything can make MG worse. Heat is my biggest culprit but infections, stress, lack of sleep, etc. can all do it. Surgery too, obviously for your wife! What is usually done before surgery for those with MG is plasmapheresis or IVIG. So if she ever has to have surgery again, they have to take that precaution!

I am curious, did she have gall bladder stones? The reason I'm asking is that some people who have a lack of stomach acid can get gall bladder problems. We all lose stomach acid as we age. It not only helps digest food but fight infection. I haven't had stomach acid for decades and used to have infections a lot. I take Betaine HCL (mild acid usually made from beets) to digest my food. DO NOT try any over the counter without a conversation with a doctor though!!!

That's really great that she is better. A crisis is really scary. I've only had one but that's enough. Lots of exacerbations though too. If she doesn't have a good pulmonologist, having one is essential. If she starts to feel worse, breathing-wise, then a pulmonologist can do the tests to see how much worse, etc. I know what my base-line pulmonary function tests are and what numbers are bad for me. It's different for everyone. My pulmy has standing orders for when I'm worse, which is great. She'll do arterial blood gases if necessary too. Neurologists are the ones who diagnose MG but often it's the pulmys who manage it. They will work together in the hospital for MG care.

The key for me to keep me doing okay is to make sure I don't get overheated and always balance what I do with the right amount of rest.

I hope that helps. Please tell your wife to come on over! This is a great forum filled with very compassionate people.

Annie

Sorry your wife had such a hard time and glad she over came it. Annie is right, plasma exchange should be done before surgery, thats what they did with me. I give her lots of credit for teaching with MG as that is a very stressful career {I volunteer in the school here so I know what the teachers go through} Annie, what you said about the pulmonologist surprised me because I have been in remission for so long I went to my pulmy after an inhalation accident and he decided my MG was back and sent me to my neuro and my neuro is the Dr. who manages me, my pulmy has nothing to do with my care as I am allergic to inhalers {Personally, I think he is afraid of me and my MG} Thankfully I have a great Neuro and have not suffered any major crisis. I read posts like this on and feel blessed. Kevin, remember heat is the enemy with MG so make sure your wife takes it easy and stays cool.

Hi Kevin,
I am so sorry for what your wife went through and so glad she is doing better now. I was just diagnosed with MG about 5 months ago and have never been in crisis. I have learned a lot from everyone here. You have come to the right place, everyone is wonderful. Please let your wife know this is a great place to get support and answers. Nice to meet you. Take care.
ckitty

Thanks for the replies.

AnnieB3, what was your crisis like? If you've already posted it on another thread, can you link me to it? And yes, she had many, many gallstones. Thanks for the tips.

Joanmarie, I agree (in retrospect) that she should have had IVIG or plasma prior to the surgery. Not sure if it would've made a difference (because the crisis may have been precipitated by the virus), but it sure couldn't have hurt! And by the way, I've also never heard of a pulmonologist managing MG. My wife's is managed by a very good neuro.

Thanks for the welcome ckitty!

Kevin

Hi Disjointed! Sorry for the belated welcome, but I have been under the weather recently.

I have also had several of those darn crisis situations and they were SCARY! In each of mine, I was unable to breathe and almost blacked out. It was truly terrifying! I was on Mestinon @ the time, but it just didn't cut it, b/c I was too weak @ that point....Fortunately, my neuro made me go to the hospital (ICU) where they started me on Pred, gave me IV IG and lots and lots of fluids. I was too weak to chew/swallow ice @ that point, but shortly after receiving the IV IG and steroids, I was eating everything in sight! LOL!

My crisis was due to the fact that my body was just too weak, too tired to do anything! When I first started on pred, I was sooooo happy, b/c I was able to talk and have people actually understand me - I sounded drunk or stoned b/4 the meds........

Hope this helps!

Erin

Kevin, I'm sorry - I didn't see your question. It's hard for me to read a lot of posts.

Back in 2005, I had a neuro who was not very nice, to put it mildly. So, being the rebellious woman I am, I decided that if I only "possibly" had MG as he said, I would go out there and do whatever I wanted to. We had a really hot summer that year and it made me progressively worse. I had "warning signs" that I was getting worse like sudden shortness of breath episodes while I was out running errands. Then my entire back cramped up and spasmed over the weekend. Then my abdominal muscles spasmed. I couldn't walk for two days without a walker. I had breathing tests the following Monday. My pulmy has me come in for those when I'm worse. The MIP (maximum inspiratory pressure) kept going down each time I did it. It went down to -31. Then by Wed., my O2 stats were staying at 94%, and even falling lower. So I went to Urgent Care to make sure I was okay.

The doctor there did an exam and ran blood tests like thyroid and electrolytes (which can make MG worse). He had also done a neuro exam. When he came back in, he said that the tests were fine but I couldn't squeeze his fingers at all. Being really weirded out by that, I said that I was squeezing his purple latex gloves really hard. He said, no, I wasn't. So I had gotten so weak so slowly that I hadn't really noticed how bad I was.

Anyway, I was admitted to the hospital. My O2 saturation was dipping below 80% by the time I was put in a room. The rest of the story I can't really write about because it's one of those traumas that is unreal to even think about. Bottom line is that, after FOUR DAYS, they gave me Solu-Medrol (IV steroids) and then oral steroids and sent me home.

Everyone's "crisis" experience is different. And tell your wife that she can have exacerbations that are an "almost crisis" that are just as serious. She should really get a pulmonologist for that reason.

I hope that answers your question well enough.

Annie