Originally Posted by bchgrl

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 bchgrl

Thanks for sharing Anna. I’m sorry about your diagnosis as well. That must be so hard with kids!

I have a few questions for you or anybody else who can answer them. You mentioned IVIG treatment. One of the things I’ve wondered about and have on my list of questions for the neuro, is how often they can do IVIG. Do they only do it if you are in crisis mode, or in my case, before a surgery? I’ve tried to research this, and I seem to find different answers which just confuse me more. (Not to mention I can only stay on the computer for so long before I get nauseous because of my eyes, ugh!) I mean do they ever do infusions as a standard treatment every few months or so to re-energize you?

Also, you mentioned an MG clinic, where is that and what do they do there?

You and Annie have definitely convinced me to ask my doctor about taking the pyridostigmine more often but maybe in smaller doses. He hasn’t mentioned any other medications to try yet, but I’m sure when I see him Thursday and he sees how I’m doing with current meds and dosages I’ll find out more.

Thank you again!
Kristi

I have set some “goals” for my husband and I to look forward to in up the upcoming coming months. First, we usually spend the winter in Florida. In fact, we would already be there if this hadn’t happened. My goal is to go after the first of the year. My neurologist already said I could get a neuro there, and maybe they could work together. I’ve planned other simple things like a concert in April, and big things like a cruise next summer. Of course everything is refundable. I’m happy you are able to do your photography again. (The photo is beautiful)

Originally Posted by bchgrl

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

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 bchgrl

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!