I am waiting for a diagnosis, but my primary doctor, the ER doctor and the neurologist all suspect MG. I am currently on prednisone but nothing else. My legs become so weak that I now have to use a walker. It stared 8 weeks ago with muscle fatigue. Some days, I just couldn't get through the afternoon. It would be harder to get up the steps, my walking slowed down, my arms would feel heavy. So I went in for a physical and basically everything was fine except the Epstein Barr virus reactivated. I wasn't sick, though. Then I had this bizarre episode after walking all day at the zoo. I felt like it was hard to keep myself steady when standing. Like, one of the kids barely bumped me, and I felt like I would fall over. I wasn't dizzy, just off balance. Then I went to bend down, and my legs just kind of gave out, like jello. Then I knew something was wrong. I told my husband on the drive home, that when we returned I would go to the ER. But after 2 hours in the car, I was better. My legs were tired, but I was steady and my legs worked again. So I decided to just make another appointment. I had more labs (normal except a very low positive ANA) and a brain MRI which was negative. Then about 10 days ago I had trouble walking in the evening. My legs wouldbuckle the more I walked. I also had fatigue in my triceps, shoulders, mouth and tongue. Talking and eating make my mouth tired. So I went to the ER, and I got an intelligent and caring doctor who listened and researched. He suspected MG. He ordered the antibody panel and gave me an injection of Depo Medrol. I got progressively worse over the next two days, to where I couldn't walk at all. We went to a University Medical Center and go no help. It was terrible and so discouraging to be sent home unable to walk. But thankfully the next day, I improved. Most likely a result of the steroid. I saw a neurologist Friday who suspects MG or maybe myositis. He started me on prednisone. I've been okay, having periods of weakness after being up awhile and especially in the evening, but today has been so hard all day. I have four children, thankfully three are old enough to take care of their basic needs, but it's so hard to not be able to care for them and my home. I have had some help so I'm thankful for that. Currently, I am waiting on the acetylcholine receptor antibody test that was drawn in the ER 10 days ago. It was sent to a lab Salt Lake City. Does this test normally take this long? I've been calling the hospital and they're supposed to look into it. I'm just ready for a diagnosis so I can get treated. Does the Mesitonin work pretty well in your experiences? I just want to be able to do my basic daily living activities, not even exercise. Thank you for listening. Today has been especially emotional for me.

One more detail, I started having slight ptosis in my left eye about 2.5 years ago. I had an MRI then, which was normal, and saw an opthalmologist, who thought MG was unlikely. He said if I had it, it was early, and I would begin to have more symptoms. And now here I am...

Hopefully Annie will come by soon and help you. Prayers for you.
Mike

Thank you.

If you've read any of my story, thank you. I typed it all pretty quickly last night and I thought of some more things. I've had two very weak days in a row, where my legs only improve with rest for a short time, maybe 2-3 minutes before they become weak again and my walking is very abnormal. It's getting hard to even move them in front of me. I've also noticed talking and eating tire me more. Also, I sometimes run out of breath while talking, which is odd. No shortness of breath otherwise. Also, on these particularly weak days, it's harder to swallow my saliva and sometimes liquid. It's like it doesn't all go down the first time. Food is okay though. Does this sound familiar to anyone?
My neurologist is going to start the Mestinon after I see him tomorrow because the acetylcholine antibody tests are delayed at the lab. They are having instrument trouble. That's frustrating but I am thankful he wants to treat me with something. I'm hopeful it will help. After talking with the nurse, it sounds like the labs he ordered for myositis came back negative, so MG is pretty likely. I will know more tomorrow, but I appreciate any insight anyone has to offer.

Thank you.

Dear LBee,

When you see the doctor tomorrow, be sure to tell the doctor about your increasing symptoms. Hopefully the doctor really will start the Mestinon tomorrow. If you are having increased trouble breathing and swallowing, the doctor may think that other treatment would be helpful also, so be sure to tell the doctor what is happening. If your symptoms grow even worse, don't wait to see the doctor. Just go to the ER. Sometimes MG can need emergency treatment in the hospital when it gets hard to breathe, swallow, and walk.

Take care,
Erin

Hi, Lbee. Sorry I'm late in responding, but I'm doing a lot of patient advocacy for my mom lately. I'm sorry you are doing so poorly and don't have answers yet. Frankly, I'm quite concerned by the symptoms you are describing. Your symptoms seem to be fatigable, and that is the hallmark of MG.

Steroids can make a MG patient worse before they're better. Your response is very typical.

Now that you are on a steroid, a SFEMG may look normal. Silly doctors. I know you needed to have some help, but they do this to patients and then there isn't enough evidence to diagnose them! And steroids are nothing to mess with. The MG experts are trying to stay away from steroids except in a hospital setting when a patient needs to be pulled out of an exacerbation or crisis. But if someone is in a crisis, IVIG or plasmapheresis is more effective. Steroids have a LOT of side effects and are hard to withdraw from.

If you can't walk, breathe, or move well, that is the time to go to the ER or dial 911. Experts recommend 911. Why? Because MG patients can go downhill very quickly. And most patients in your condition have some kind of hypoxemia, an O2 that is below normal. Hypoxemia is very hard on the brain and heart. That can cause ischemia of the heart. O2 and the heart are usually monitored in an ICU to make sure that a patient isn't rapidly becoming worse.

PLEASE don't hesitate to go in, even without a diagnosis. You have a preliminary one. You sound as though you are in an exacerbation right now. And, if you have MG, 82% O2 is a sign of a crisis. I don't mean to scare you, but the best place for you is in a hospital!

Being short of breath while talking is not odd; that's yet another sign of a crisis. You may be so weak that you don't know you are short of breath. Someone needs to do an arterial blood gas on you! And full PFTs (breathing tests), including MIP and MEP. A neuro is not a pulmonologist! MG patients need pulmonologists as well as neuros. They work together in a hospital setting.

Whatever is going on is serious. Don't doctor yourself and think, "Oh, I'll just rest and be better." That is very dangerous. You are not appreciably better. You need help. Please let us know how you're doing, ok? I hope they'll know the results soon. If not, they should redraw blood and send it down to Mayo!


Annie

Thank you for your replies. I'm so very grateful to hear from others who have this condition. I will be very observant to any worsening of my symptoms and I will be sure to tell the neurologist tomorrow.

LBee

I'm very happy to report that I saw a big improvement in my walking an hour after taking the Mestinon 30 mg. The neurologist wanted to start with a low dose because he said it could cause diarrhea. My legs are still tired but much stronger and my walking was close to normal. I walked around for 15 minutes before noticing any weakness coming on, and it was minimal. My arms and mouth showed improvement too. I'm still trying to take breaks because I don't want to overdo it.
On another note, my heart rate was 133 at the doctor, and I had been noticing that it was pounding at times since starting the steroids. The doctor is weaning me off the steroids and felt the Mestinon and 1/2 a klonipin would help bring it down, which it did. It was down to 100 an hour after taking them.
My plan is to see a neuromuscular specialist once the acetylcholine receptor antibody labs come back, so I can get a big picture plan for living with and managing this. Because I understand that while the Mestinon helps the symptoms, it does not treat the disease. Thank you for all who have listened and given advice. I realize that MG can bring on serious issues quickly and we have to be careful to pay attention to our symptoms.

I'm glad you have a good doctor, one who took you seriously.

MG can make the heart rate go faster. When someone's O2 is low, the heart beats faster in an attempt to bring more oxygen to the tissues. Having more acetylcholine brings up the O2 and, therefore, brings down the pulse.

Steroids, due to their water retention nature, tend to bring down the pulse. Be cautious of the steroid taper. When they are tapered too soon or at too high of a dose, a person can have symptoms of an adrenal crisis (fatigue, sweating, inability to concentrate, etc.).

Yes, please do take it easy. Mention can initially make someone feel like they are normal again. But even someone on 90 mg every three hours can go into a crisis.

I hope you get the answers you need! MG has a high learning curve. I highly recommend reading past posts here, and looking at these websites.

Home
Muscular Dystrophy Association

There are MDA directors across the US who are very knowledgeable of MG. They also run MDA clinics, where a visit can be free of charge.

If you have any questions, please ask! A lot of people are probably busy with activities this time of year. The forum tends to be a bit quiet.

Annie