Hi all,

Been lurking for a week and finally decided to come out and say hi!

I was finally diagnosed with MG (positive antibodies, this August) after 7 months of right-side facial weakness that my neuro thought was Bell's Palsy. Ironically, I was diagnosed with a thymoma and was successfully surgically removed BEFORE (this May) they diagnosed me with MG!

In August when I was finally diagnosed, I had minimal symptoms (only the right-side facial weakness), and my neuro at that time said ok lets just keep an eye on it. Then all of a sudden I developed double vision toward the end of the days, which after 2 weeks of it my neuro gave me 3x60 mg of mestinon daily. It def helped at the first few days, then things start to go down-hill: fatigue, droopy eyelid, difficulty swallowing, and difficulty breathing, in just about 1 week after started mestinon, I was admitted to the ER, and then 2 nights later they intubated me due to no swallowing ability and was not able to breath!

So I told them could it be the mestinon that's making me worse all of a sudden? they said no you were going into a crisis, it is pretty coincidental, plus my mestinon dosage was pretty low so there should be no over-dose issue. But they did stopped the mestinon right after I was intubated (2.5 weeks ago), and started 5 days of IVIG immediately.

So I did 5 days of IVIG, they tried to extubate me on the 7th day, but I was re-intubated again due to breathing failure at the end of the day, and they waited 2 more days to decide that IVIG's not having much of an effect on me so they started 5 rounds of plasmapheresis about the 10th day after IVIG (about a week ago). So now it has been 2.5 weeks, I was extubated again about 2 days ago, finished my last plasmapheresis but they decided to give me 3 more, and am re-started on 4x60 mestinon per day with 70 mg of prednisone daily.

I felt slightly better yesterday, but my breathing has been laboring with chest tightness (which they say that it's probably from 2 something weeks of intubation), and I was able to swallow yesterday but having a meal tires me out entirely!

Today I feel pretty weak, not as good as yesterday, perhaps because I was SO happy to be able to eat yesterday which gave me such an emotional boost. They just transferred me to a step-down unit from the ICU today, so i can still being monitored until the next 3 plasmapheresis is done. However honestly I still don't feel like I am recovering much, and I feel like I'm just trying to hang on there before I'm intubated again...........my neuro kept telling me to stay positive but it is really easier said than done, 2 weeks of intubation was TERRIBLE and as much as I hate it, I don't feel like I am recovering just yet that I can actually stay off of it for good this time........

At least my legs and hands are not really affected, so that I could still do things on my laptop here at the hospital bed, but I truly wonder how long it will take for me to get better or actually get over this crisis, according to the docs I'm over it and I'm recovering but as much as I'd like to think so, I don't really feel that way....

They've been testing my Nif and VC and blood gas, before the plasmapherisis it was like -10 to -15, and 1.9 liters. Afterwards, they saw improvements (-30 to -40, with 2.2 liters), they extubated me 2 days ago. these days they still come in and check it every 4 hours or so, my nif is able to go off the chart (-60 or more), but my VC is steadly dropping ( from the initial 2.2 down to 1.7 now), which the docs are actually not concerned about!

I wonder if anyone here has been in such a severe crisis before? And how long did it take for you guys to start recover from it? All the docs here ( at long island, NY ) are telling me that it WILL get better, but it takes time and it is different for everyone, so just stay positive and be patient, but I just feel so alone and helpless, the waiting game is not fun and although they like my numbers, I just don't feel right....

CPU-

Hello. I have a similar story. I dont have too much time but wanted to let you that it isnt abnromal and many people have stories like you here.

I was diagnosed then had my thymus removed, then started getting bad, had 4 crises' and was intubated for 2 weeks. I too was excited to eat But you do have days where you feel better and days when you feel worse especially directly after a crisis. I was 17 when it happened, so it took me less time than say an older adult.

But it probably took me a month or 2 to recover from something like that.

please feel free to ask any questions.

Its so hard to stay positive, but the only way to be, i think.

Stay strong.

-Tyson

Hi,

So sorry to hear what you have been (and still are going) through.

You do not have to be positive about it. In fact why should you be positive about such missmanagement? maybe if people were more negative about this, things would have changed, and there would be less people like you that end up being intubated, or other complications of this illness, when proper management early on could have significantly changed this outcome.

Did any one mention non-invasive ventilation to support you through this period? In many patients this can avoid the need for intubation.
Did any one discuss with you how to manage your swallowing problems, to avoid reaching a state where you can not swallow at all?
Have you been seen by a speech therapist with a good understanding of MG? they can be very helpful in helping you with this.

Instead of telling you to be positive and patient, your physicians should help you find the way to function better and receive proper supportive care.

It is unusual for the vital capacity to drop like that with a normal MIP, so possibly it is because of abnormal closure of your throat outlet due to weakness of your swallowing muscles. they need to assess it, with a nose clip, so that air doesn't escape. They also need to teach you how to avoid aspirating your food and drink.

Tell them a patient can be positive if he sees progress, and can actively participate in his/her recovery, and not if he/she is told to just lie down patiently and wait for something to happen.

Hope you feel better soon,

alice

Sounds familiar....
My daughter (24) was diagnosed with thymoma and offered a surgery BEFORE she was Dx with MG.The surgery was scheduled,and 2 weeks before she started having double vision,extreme fatigue,cough etc.
It did not stop her neuro and surgeon from proceeding with thymectomy (without any treatment for MG!)-----so she went into crisis right after surgery, was not extubated (they tried to...then reintubated),so in 10 days they did trach.....overall 43 days in ICU.IVIG,Plasma,Pred 80 mg.Mestinon id not do much....
Yes,it WILL get better...Yes,you should keep positive.
If you are in NY,there is dr Adam Bender there -he,like he said, is in " MG business" since late 70s.Try to get him to see you.He is a very good dr.
Best of luck to you
.Marin

Hi all,

Thanks so much for the support and the experience. I really appreciate it! I have been transferred out of the ICU and am now in the general neurology ward. Can't say that it's been much better as my shortness of breath, chest tightness, and the overall weakness is still there, but I HOPE things will not go back down-hill again..!

Yea some days I feel better and some days I feel worse, hopefully I get better overall though..

extubated 6 days ago and counting, thanks for the support and I'm still hanging in there so far...!