Thank you Kay. I had my first IVIG on Friday and I am not feeling great. My eyes are much worse and I am feeling very dizzy and off. Spending a lot of time in bed eyes closed. I go tomorrow for another IVIG treatment and on Friday for CT scan of my chest. Awaiting to hear if I get approval for Rystiggo. Hope I hear real soon. Feeling pretty rough for now. I tested positive for Musk. Thanks for checking in on me. I hope you are keeping well. Take care

I feel your frustration. Hang in there. This is not easy.
A lot of doctor just don't know much. Everybody is so different. Good luck. I hope that you have a good doctor that helps. Take care

Thank you Kay. I’m sorry you went through this with little help. My symptoms have stopped me from doing things. Ocular and slurring of speech started end of August and so bad I can’t go out or drive. Light sensitivity is horrendous. I started having breathlessness in January and can’t walk very far and even doing something very minor is causing breathlessness. My neck has also become very weak. I tested positive for Musk MG am on 50 mg prednisone and awaiting approval for Rystiggo. I will call my neuro specialist today and see what he thinks. He mentioned that if I did not get Rystiggo soon he may have me get an IVIG treatment. I’m fairly new to all of this and it’s frightening.

Hi Cheryl!
Back in 2021 I woke up in the middle of the night not being able to catch my breath. I took a trip to the emergency by ambulance not knowing what was going on with me. I've had this for many years and never had this kind of problem.
I was tested for so many things over the next 2 years and they couldn't find the reason.
I still have this problem everyday. Now it comes on and it goes away. Sometimes when I eat too much it gets worse and then after a couple of hours it gets better.
I had a lot of allergy testing and showed that I became allergic to almost everything. Not a lot on everything but trees, dogs, cats and my pulmonologist said wow. Looks like you're allergic to everything so that's probably the fact that I had my thymus removed. That's my guess. Looked up to see if this could cause problems and it does after 30 years. I guess I should expect something when you get older things. Just get a little worse.
When I went to the hospital they put me on oxygen and I was there many hours and they didn't seem to be very caring.
They knew I had myasthenia gravis didn't seem to be any urgency on what I was going through.
It was really scary for me and they wouldn't even keep me. They let me go. Did absolutely nothing for me. I left the hospital went out sat on that grass gasping for air. Waiting for my ride.
Over the last few years I have gotten better but it's something I live with now daily however, it's not bad enough that it stops me from doing anything I still carry on.
I hope that you get better care than I had. Good luck