Hello, I'm new to this site and was recently diagnosed with Myasthenia Gravis. Years back a test came back positive in the modulating part of the acetylcholine test, but then showed up negative on other tests. I have had muscle weakness to the point of being hospitalized for breathing problems. Recently I had an anti ach receptor antibody test and it showed me positive again modulating at 41%. I'm not even sure if this is the same type of test I've taken at other times. Anyhow, my Rheumatologist tested me for various other autoimmune diseases and even Lyme disease, and this was the only thing that was positive, besides high c reactive protein. He diagnosed me with Myasthenia Gravis and I'm not sure if this test alone is enough to give me a diagnosis. The doctor put me on Mestinon and it helps me with my breathing problems and the weak muscles in my back however, my neck and swallowing muscles are weaker from taking this med. This morning, I couldn't remember if I took my pill or not. I felt like an elephant was sitting on my chest and I could only get up to do chores in ten minute spurts before resting. All my muscles felt heavy. I think I probably didn't take it this morning. I waited until the afternoon to take my next pill and felt better afterwards. Is this a normal reaction when any of you miss a dose? I take 60 mg every eight hours.

Hi, and welcome. Your post alarms me. I don't think your illness is being properly managed. Mestinon helps with symptoms of MG, but most people who have symptoms as severe as yours need more than Mestinon--there are many other treatments available. Has anyone talked to you about other treatments? Also, Mestinon has a short half-life. Taking it only every eight hours doesn't make sense. Your rheumatologist needs to refer you immediately to a neurologist who specializes in neuromuscular diseases.

Most important, you need to know that if your symptoms are getting worse, you may be headed for an MG crisis. If you're having trouble breathing, or find you can't swallow, or you're suddenly a lot weaker than you've been before, this is an emergency. Go to the ER. There are very effective treatments for MG that you can get in the hospital (like IVIg and plasmapheresis).

A positive antibody test like you have is considered a definitive diagnosis of MG. That doesn't guarantee you don't have another disease as well, but I don't think any neurologist would doubt that you have MG.

Abby

Thank you for the response Stellatum. Where I live the ER does nothing for me. When I had breathing problems last time they sent me in an ambulance on a two hour drive to another hospital, there's no neurologist on staff, and all that hospital did was have me rest. My oxygen level was high, as it always is, and they did a breathing test where I had to blow into this tube and I did alright, but they did the test a week after I rested in the hospital. After the test I was sent home, but any time I made any effort to do anything my breathing was bad again. I can't take any prednisone, I become really paranoid on it, I think they call it Prednisone Psychosis. So they couldn't treat me with steroids in the hospital.

This Rheumatologist is the only one who is doing anything. He's at least trying to see how Mestinon affects me. I go back to see him on the 16th. I've been going through this for more than ten years, and it's getting worse. I've gone to a Neurologist and wasn't helped. I think, in the small town I live in, that the doctors just don't know enough about this. I need to be more informed to let the doctors know how to treat me. I do feel a lot better when I don't skip a dose. It's weird, but I while on Mestinon, I get these surges of energy after I start sweating and my breathing gets so much better. The Rheumatologist said that if the Mestinon doesn't work he would try something else. He also said if this med didn't work he wanted to check for malignancies.

I'm sorry it's so hard. I do understand that just because you need a certain kind of care doesn't mean it's accessible to you.

When you see the rheumatologist again, ask if you can try the Mestinon doses closer together. Four hours is standard. Also, every MG patient should have a thymus scan, because a significant percentage of people with MG have a tumor of the thymus gland--every MG patient, whether he's responding to drugs or not.

There are other drugs besides Prednisone that you could take as a long-term treatment for MG: Imuran and CellCept are two common ones. These aren't steroids. I hope that your doctor will consider them. Please consider asking him about IVIg, too. This is a treatment where pooled antibodies from donor blood are infused into you by IV. Your rheumatologist will be familiar with it because it's used to treat many different diseases, though he may not be familiar with how it's used with MG.

Abby

I think I should call the Rheumatologist tomorrow because today was horrible and I didn't miss a dose. It might be better if I can take more doses throughout the day, maybe with lower doses because I don't know if the 60 mg is overdosing me. I've had a Ct scan and xrays of my chest years ago when a Neurologist suspected MG, but there was nothing indicating thymoma. The Rheumatologist also ordered an xray which didn't show anything.

I'm so frustrated with my body right now. I used to hike up mountains, now I'm lucky if I can hike to the front yard. Hopefully the doc can adjust my dose and maybe give me something else to help with whatever the mestinon doesn't handle.

Hi Quandry,
Stellatum is right: standart Mestinon dosing is 60 mg every four hours...and after some experience you can appropriate the dosing to your needs. Personnally I take 60 mg every 2, 3 or 4 hours (max 6 per day) depending on my physical activity.
I'm also on 8,5 mg Pred per day (tapering) and Plasma Exchanges every 5,5 weeks. I tried before Cellcept and IVIG but they didn't work for me.
You see that different treatments are available...
It's a pity that you can't get to a decent MG neurologist!
Good luck to you,
Maurice.

I agree with both above. I don't have symptoms nearly as bad as you, and I take 60 mil Mestinon 3 x day. I do fine on that, but still notice some slight problems now and then. Nothing I can't handle. Im will ask for more from my Nuro, if it becomes a real problem
Good luck to you, and try to get to a real Nuro. I think you need the help.
FREDH

Quandry, Hi and welcome. You'll have to give yourself some time to get used to MG and the drugs. But if you are so bad that you can't move or breathe well, you need to dial 911. With MG, that's an emergency.

You have to know that your O2 saturation can look okay but you might not be. They have to do more tests to figure that out like an arterial blood gas and full pulmonary function tests.

Ditto on what these guys have said.

A rheumatologist is NOT qualified to treat MG. You need a neurologist.

I'm a modulating only MGer too. When I'm feeling better, I'll give you more information to take to a neurologist. In the meantime, you need to see someone right away. You need some direction and help with all of this.

I'm sorry you aren't doing well. Mestinon is a helper drug but does nothing to address the immune antibody attack. Please seek out help and don't overdo physical activity until you do. Take care.

Annie

Thank you all for your comments. I finally talked to the Rheumatologist and he said to take half a dose every four hours. He said something about establishing a baseline and that we would discuss more meds on the 16th. He's also setting me up for a ct scan. I had one years ago, but he thinks I should have another.

I looked online to find a neurologist that deals in Neuromuscular medicine and the closest doctor is two hours away. I'm not even sure that's the right type of Neurologist or not, but I don't want to waste any more time on Neurologists who don't know anything about MG. So, I'd be willing to travel two hours to get the help I need.

I would like more information when you're feeling better Annie.

That half dose of mestinon every four hours is working. I walked all around Walmart today.