Hi, Icrad1. Welcome. Do you go by that or another name?
Facing down any disease is overwhelming. You need to try to relax and give yourself some time to get your head around it all. Does it help to know that I've had MG my entire life and am okay? And I wasn't diagnosed until I was 41. My MG has been good and really bad, resulting in an MG crisis. So much depends upon how you manage MG. Stress is definitely not good for MG, so please try to believe that everything will be okay.
What you describe sounds like the AChR (acetylcholine) binding antibody test. Did they do the modulating antibody test too? They're normally done at the same time. Do you have the report? The reason I ask is that a thymoma (tumor of the thymus gland) is more suspect in someone with a very high modulating titer. Some people with MG can have one but not the vast majority!
Yes, your antibodies are very high. Antibodies alone do not diagnose MG but with your clinical symptoms plus that test, it's very likely that you do have MG. Do you know what lab did the test? Did you have an EMG? A Single Fiber EMG? Also, you can have really high antibodies and be clinically okay or have low ones and be really bad. They're not really the best indicator of how your MG is doing!
So don't let the numbers freak you out, okay?
What you need to go on, like Abby said, is how you are feeling. If you can't move well, breathe well or can't swallow, it's time for that 911 call. They can take very good care of you in the hospital. I would add that when you are feeling up to it, you should find a good pulmonologist and have them run breathing tests. Not just the quickie ones but the thorough ones that include MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). What they measure is how well you are doing at breathing in and out. They are specific to people with a neuromuscular disease. We can go into all that at a later date! Right now, you just need some basics.
You do NOT need both a CT and MRI of the chest!!! That's ridiculous and not good for your body. Most MGers have a chest CT only. It's your CHOICE whether or not you have Iodine contrast. Iodine can make MG worse. That's very problematic since you are not on drugs yet. You have the right to say "No" to the contrast!!!
Mestinon (PDF below) is a "helper" drug for MG. It keeps acetylcholine (ah-seat-ill-co-lean) around longer so that our muscles can use more of it, making them stronger. I'm really surprised you didn't get a prescription right away. Acetylcholine (ACh) is a neurotransmitter whose job it is to keep everyone's muscles strong. We just don't get enough of it due to antibodies either destroying or blocking our neuromuscular junction. That's the place where the nerves "send" the ACh into the muscles.
You're going to need some time to get used to all of this before you let them throw all kinds of drug options beyond Mestinon at you. Mestinon can have some side effects but most people do fine on it. The immunosuppressants, however, can be fraught with problems and you need to read about them first. Steroids are often doled out like candy and they can have some very bad long-term effects and are hard to come off of. They have "alogrithms" they use for patients but the problem is that not all patients respond in that kind of narrow-minded or predictable way!
You sound like you're doing the typical female thing . . . blame yourself for not being in good enough shape when you get sick! This has nothing to do with how much or little you weigh. MG is an autoimmune attack on the neuromuscular junction, where nerves and muscles meet. You didn't bring this on nor is this in your head!
Prednisone, BTW, can initially make MG worse. That could be what happened when your allergist gave it to you. You need to tell your neurologist about this because it would have an effect on any treatment you'd have.
The most important thing I can tell you about MG is that you cannot "push" it. If you do, it will just push back. It tends to then get exponentially worse, like the earthquake scale! The worse you get, the longer it takes to recover. So the most important thing is to rest between activities and not let things get worse. Get enough sleep. Take a nap if you need to. There are times when my MG gives me no choice in the matter and literally puts me to sleep.
Other things that can make MG worse are infections, surgery, heat and cold (when the body gets too hot or cold), doing too "sustained" of an activity, crying (stop that!) and some drugs. There are things you CAN do to help right now, like sleep well, drink plenty of water, eat good, nutritious foods and RELAX.
I'm not trying to scare you by saying what I'm going to say but you need to be aware of it. Many MGers have an MG crisis - where you get so weak that you can't walk/stand/move, swallow or breathe well - in the first year of being diagnosed. It's usually because they don't understand how bad MG can get and do "push" themselves. They can think that being on drugs means that they can go back to being "normal" again. You'll have to get used to a new normal.
But that's okay. It's not a death sentence! As long as you respect the disease and take good care of yourself.
Do you have a significant other to help? Family and friends? I would highly suggest that, when you are ready, you make them realize how serious MG can be and that you may need help from time to time. Right now, however, the main issue is getting care for YOU. I would make that phone call to your neuro and ask to try the Mestinon! It comes in tablet and syrup form. I use the syrup, mainly because it absorbs better for me due to no stomach acid. It also is easier to titrate the dose amount. It's not, however, easy to carry around like the tablets are!
Please don't respond to my post if your arms are weak! It's not necessary. I just put those questions out there for you to think about. You need to rest those typing arms! I'm frankly concerned that you are bad enough to go to the hospital soon. You are saying things that sound like you need help right away. Don't panic about that! Just sit there and assess how bad you think you are. Sometimes you can get weaker so slowly and not even realize how weak you really are.
About the eyelids . . . if yours are at "half mast" all the time, you wouldn't notice a difference! Take photos of your face now or rather have someone else do it since you're worn out. Then take photos after you get Mestinon. You might find that your eyelids, eyebrows and rest of your face do indeed droop.
I never noticed mine were drooping but ALL of my photos from my childhood and beyond clearly show ptosis (toe-sis)/eyelid drooping.
Anyway, take it easy. Dial 911 if you are very weak. Don't be shy about that either! Watching a movie to get your mind off of this for awhile might help too! We're here, if you need us. Abby and so many others here are fantastic at support and information. It's a great place to feel less alone with this disease.
Annie