I guess no more summer trips to the beach this summer. Thanks for a warning Mike.
Something scary happened today, I had to pick up my little one and when I was driving back home i all of the sudden started feeling so tired and weak all over my body that I couldn't even press on the gas pedal to drive faster than 20 mph. I couldn't risk it with my son in the car so I pulled over and called to be picked up. So frustrating and upsetting.
How do you live your every day lives with this disease??? You are feeling somewhat ok and all of the sudden weakness attacks you with so much power that you can't move your body or even talk. I'm sure you guys are still trying to work, spend time with your family and do stuff that other non-sick people do. How to make it all work ��.

I am lucky in a way. When my bout started I was retired. I had to stop driving for about 1 year due to double vision. Each person has their unique problems. It took a number of years to get my MG stable and figure out all my triggers. I think of my MG every minute of the day.
Mike

That's like good in bad meaning being already on retirement when you got MG. I'm 35 so long way to retirement.
My neuro sent me to ER today as she thinks I might be in crisis since yesterday incident. Can't even walk that's how weak I am. Swallowing and talking is a problem too. My fingers are obviously ok since I can type this from my phone. We will see what's next for me.

plmonica, You have a smart neuro! I was thinking you were close, too.

If you ever get like you just did again, dialing 911 is the best thing to do—along with calling your neuro, if you can speak!

In the hospital, they should check your O2 AND your arterial blood gases. The O2 reading is an insensitive measure of impending muscle failure. If you are stable, they might do MIP and MEP (breathing in and out tests). If your O2 is below 93, they would probably start you on oxygen, while monitoring your O2. If they're smart, they'll check your O2 AND pulse while moving. A higher than normal sitting pulse means that your heart is working harder to get you oxygen.

The options are IV Sol-Medrol (steroid), followed by steroid tablets, plasmapheresis, or IVIG. Or a combo. Since you're new to MG, they might go the steroid route. If they do, make sure they give you a taper schedule, too.

Okay, that's their job. YOUR job is to do NOTHING. No emails, no internet, no nothing. Sit still and rest all of your muscles.

The worse MG gets, the longer it takes to recover. MG isn't as simple as "do something, rest, get better." The more you do without resting and drugs, the worse you get. It can be a cumulative effect.

While Mestinon is a great helper drug, it does nothing to counteract the immune attack on the muscle receptors. Mestinon can make you feel better, and, therefore, make you think you can do anything.

I hope you'll get the best care and recover as quickly as possible. There will be plenty of time later to talk about MG and how to manage it in the future!

Thanks, Sue, Fred, and Mike for helping her out!


Annie

Listen to Annie she is our expert. Happy you have a smart neuro.
Mike

Thank you all for support and advice. Annie your post with the info you provided was very helpful, thank you.
Got admitted to the hospital, getting steroids and 5 day IVIG treatment and Mestinon. CT for thymus was negative so at least we can rule out the surgery. They were considering moving me to ICU today because I got shortness of breath on top of the symptoms I already had but with oxygen we were able to stabilize my breathing with no need for ventilation.
I have a question, how is your appetite with MG on daily basis or when in crises. I'm trying to eat as I know it's important too but lost all my appetite. Be well and strong everyone!!

They might want to consider a BiPap while there and/or at home. That's the next step up from oxygen before intubating.

Doctors tend to discharge MG patients too soon, and don't do an "exit evaluation." You can't tell by looking if MG is better. And steroids can temporarily make a patient worse before they get better.

Try to stay away from salt while on steroids so that you don't retain too much fluid. Of course, while on IVIG, you need to stay hydrated! Also, I hope they are doing the routine premed of Benadryl and tylenol before IVIG treatments AND not running the infusion too quickly.

Make sure you take calcium and vitamin D while on the steroids. Plus try to have good prostaglandins (steroids are anti-prostaglandins) such as eating fish or walnuts or having some sort of omega 3s, etc. The reason some people have stomach issues while on Pred is that it reduces the gel coating of the stomach, so having those extra omegas will counteract that.

I'm sure they told you to watch out for a severe headache or meningitis while on IVIG, right?

You might want to invest in an oximeter. I like the Nonin brand but there are many different ones out there. You'll start to see patterns over time and know when you're getting worse (other than checking your strength and ability to breathe!).

I forgot to say that you were REALLY smart to stop driving. When MG gets worse, it's like driving drunk. Response time is slower.

When a person can't breathe well, they have the choice of breathing or eating. Really, it's that simple.

I am the slowest eater in my family because of MG, but that's a good thing. I take my time eating, making sure that I don't choke. Taking sips of water between bites helps, too.

Try to have some protein shakes or something to get more nutrients right now. They can advise you on that.

If you need help with a social worker, by all means, ask them for that help!

Naps are key for you right now. The drugs will help, but you have to slow down. And socializing is one of the hardest activities because it uses more muscle groups at one time.

Well, let us know how you're doing and what else we can do to help you out, okay?

Annie

I think you're exaggerating a tad, Mike, but it's sweet all the same.

Annie, I'm extremely overwhelmed with this disease. For somebody who was always on the run and master in multitasking the diagnosis of MG sounds almost like a death sentence. That's how I feel right now but I hope it's because it's new and I will adjust to it. They started IVIG last night right after I got admitted but had to stop after 1 hour because I got extreme headache, shivers and nausea. Today they medicated me with Tylenol, Benadryl and lots of fluids for hydration before giving IVIG so I don't get the side effects and I was fine. Also when I got bad reaction they were running the IV at 80. Today they started at 24, increased to 50, then 2 more increases I don't remember what numbers but ended up at 100. I asked what's the max number they can increase it to and was told 180. Will be getting second infusion tomorrow but it shouldn't be done sooner than 24 hours after starting the first one correct? So if I started 3 pm today and finished at 9 pm then tomorrow I should start 3 pm again, right? As far as discharging me home my neuro said often patients start the treatment in the hospital and finish last 2 or 3 at home but she doesn't think it's a good idea in my case. She prefers to keep me here. As far as going home I will probably take steroids but my question is how long can you take steroids for? They have a lot of side effects so I would prefer not to take it at all and take different meds in addition to Mestinon if there are any available that will work their magic and bust my immune system.

Yes, you should have it at the same time. Veteran MGers might not have to do that.

I totally agree with your neuro. You should be in the hospital for the entire treatment, because this is your first one AND you are still in the middle of a MG crisis.

I was on a one month taper of steroids after my MG crisis. Everyone reacts differently and you might be okay with a faster taper or might need a longer one. I specifically asked for a lower dose and a slow taper over one month. Steroids make me nuts (steroid psychosis), so I didn't want to be on them longer than I had to be, but I also didn't want to have a return of crisis symptoms.

What is the maintenance dose they have thought about putting you on? Sometimes they go too high to begin with, after IV Solu-Medrol.

Long-term steroid use is, IMO, dumb. There are so many side effects that you end up with more than the one problem you began with!

If you can use other treatments such as immunosuppressants or IVIG, that's a better way to go. But, and however, it's your body and your life and you need to decide with your neuro what is right for you!

Please don't be overwhelmed! The most important thing right now is to just get through this MG crisis. There are many people who live a fairly normal life with MG. There are those of us who don't. Some people have drug-induced remission and others are drug-free.

Adapting your lifestyle is as important as any drugs you might take. Having support from family and friends helps, too.

And now that you know what happens when you push MG, I doubt you'll do that again!

Sure, there's a lot to learn about MG and it's really not a fun disease, but you can get through it!

Keep asking questions. People here are great and have many varied experiences to share!

Annie

I'm in a very bad situation with my MG or whatever it is I have. Maybe Annie or somebody here has any idea. So like I was saying before I was admitted to the hospital on Friday and I started treatment for MG flare up, that's what they named it since I had no breathing problems. On Sunday I got worse and got moved from regular neuro unit to ICU. I got swallowing problems and couldn't take Mestinon so I have a feeding tube now. Was too weak to get up to the bathroom too so got catheter inserted. I'm on IVIG, steroids and Mestinon. Today was the worse day in my life..... That's how it started: woke up weak in the hospital, got my steroids in the IV, later got headache and nausea and that's when I got weak, actually I shouldn't call it weak, it felt like paralyzed from head to toes. Wasn't able to move at all as my body felt like somebody poured concrete on it and it was too heavy to move. Couldnt talk, my eyes were stuck on one object in the room and felt like I'm not blinking at all. That's when they got feeding tube and catheter inserted. I stayed like that with my body paralyzed until I got my dose of Mestinon and another IVIG. I'm Terrified!!! My doctor decided to do another EMG at the time when I couldn't move at all as she expected that we will get bad results. Guess what.... Test was inconclusive. I did the same test like 2 months ago in her office when my only symptoms at that time was weakness and it wasn't perfect. Now it was! I tested negative for ACH antibodies, don't have results from anti MUSK test yet, CT of thymus was negative too. They said they don't know what I have as I gave all the symptoms of MG but all the tests are negative. Do you think that meds that I'm taking for it could cause a reaction like this? I feel like I have a beast inside of me that wakes up every day to paralyze my body since we started treatment. Is that true that while on steroids you first get worse to get better later?? I'm praying that at least breathing will not fail me as I need to get out of this nightmare for my 2 year old son. Doctors that I have said they never seen such an severe attracts on MG. Btw they have been practicing for 20 years. Does anybody here have an idea what other than MG I may have??? I'm hoping that today was a breaking point in my therapy and I will start getting better tomorrow. I was better with my symptoms when I got admitted to the hospital than now when I'm doing the treatment. Please any ideas you have share them with me. I got strength back in my hands and fingers tonight so I'm typing it really quick as I don't know what's gonna happen in the next few hours. Thank you so much!!!!!! And sorry for a long post.