Originally Posted by bchgrl (Post 1270833)

Hi!
I’ve had a few updates since my last post.

I went for a follow up with my Neurologist here in Kansas City December 18th. He didn’t like what he saw. He thought I’d be stronger than I was since my last appointment and the thymectomy. He admitted me to the hospital for Plasmapheresis treatments. He said he may be going to an extreme, but he wanted me to gain strength before the holidays and trying to get to Florida. I was happy he took the more aggressive approach. I had 5 treatments and was released on the 6th day. My first day home I felt better than I had in months! I woke up the 2nd day, however, really bad. I missed all Christmas activities. But since then I’ve been better than before the treatments, just not as good as the first day. I’m just on that daily roller coaster we MG patients live on!

Annie, I wanted you to know I have an appointment with Dr. Weiss January 8th. I’m anxious to see what he says!

Happy New Year!

Originally Posted by penningtonedward1@g (Post 1270868)

I am glad to here you are doing better!
Who is your Neurologist in Kansas City?
Mine is Dr Pasnoor!
I go back in March for my follow up appointment!
Happy New Year 2019 hope it’s a better year👏
Alton

Originally Posted by bchgrl (Post 1270870)

I go to Dr. Kelley with Shawnee Mission.

Originally Posted by AnnieB3 (Post 1270841)

Are you back on Mestinon? I hope so!

If you don't have an oximeter, that might be a good thing to have. You can then know your normal and what isn't. Just don't panic if you have one on the plane with you! O2 tanks in an airplane.

I'm glad that your doc finally wised up, and got you treatment you need.

I'm sure that Dr. Weiss will help you with whatever you need. He has years of experience with MG, and treating it. He is an amazing doctor and human being. Just make sure that you ask as many questions as you need to. He might be able to refer you to a neuro closer to where you will be in FL.

Be careful in that Florida heat. Yeah, I know, it's winter. But you really have to stay cool. And please nap after any activity. Don't overdo. To me, your MG doesn't sound stable.

Please let us know how you are doing! Trust your instincts. I hope you have a good time.

:grouphug:
Annie

Originally Posted by bchgrl (Post 1269560)

Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active, healthy, 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelids were swollen and I thought it was because I had messed with my contacts. I realize now that was the "droopy eyelid". Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, time to call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. I was having trouble chewing, words would get "stuck" in my mouth, my smile was askew, and I was constantly dizzy and nauseous from the triple/jumpy vision. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. By the time I went in for the surgery, I could barely walk across the room or raise my arms. They decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stairs with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this "new normal" of mine from the MG Community would be greatly appreciated!
Thanks!

Originally Posted by Rojo (Post 1273164)

Hi Mikanro, et al: I'm new to this process and I am just learning about MG. However, I thought that I would toss into the discussion my situation since my Dr has started working on getting me on Soliris IV. As I understand it, the initial treatment requires Infusion for four consecutive weeks (1/wk) and then a higher does the fifth week -- then doses every other week forever. His main concern is to get me off of Prednisone. So far my problems have been mild and just related to my tongue and speech slurs -- this started "overnight" about 5 years ago. I am 84 years old now. Compared to many in this discussion, I have been very lucky. Wishing good luck to all.

Originally Posted by penningtonedward1@g (Post 1273257)

Haven’t posted for a while MG can come on very suddenly mine started with double vision and weak legs !
Had a Thymectomy November of last year did not have a tumor
My Neurologist recommendation was a Thymectomy!
After surgery I am seeing improvements have cut my medicine in half !
Hoping for remission my take up to 2 to 3 years !
Everyone’s MG is different so stay positive
and prayers for yours to go into remission 🙏

Alton