NeuroTalk Support Groups - Sudden Onset of MG

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Sudden Onset of MG (https://www.neurotalk.org/myasthenia-gravis/252592-sudden-onset-mg.html)

There are Two other MG gurus in Florida, one in Jacksonville, one in Miami/Dade. Their names are escaping me now, of course. Also, wherever you will be in Florida, see if there are any local support support groups nearby, maybe to find out who others go to. (We have one here in Orlando).

Thank you! I will! We are in Fort Lauderdale, so Miami Dade isn’t very far from us!

Quick update...
I went back to the neurologist Thursday. He took me completely off the pyridastigmine for a few days. He did feel like I was possibly going through a cholinergic crisis. He kept me on the prednisone for now, however. Depending on how I do over the next few days, he’ll start tweaking the prednisone and we’ll go from there.

Doctors always do this knee jerk reaction thing, where their actions are all or nothing. Oy.

There's a happy medium with Mestinon, as I explained. If you become worse while off of Mestinon, call the neuro back right away. You don't need to go into a crisis of either kind (too much or not enough acetylcholine!).

Annie

Quote:

Originally Posted by AnnieB3 (Post 1269795)

Taking me off the pyridastigmine didn’t work, (I thought of you Annie, when he told me he was doing that😄), double vision came back, slurred speech, weakened facial muscles, etc. Anyway, he put me back on very low dose; 30mg, every 6 hours. I told him about taking less more often, but he didn’t do that for reason.

Doctors are human, and get scared. ;)

60 mg. every 3 - 4 hours is sensible. Obviously you don't have enough acetylcholine, not too much.

He must not know of the very short life of Mestinon. Just tell him that Mestinon kicks in after 20 - 30 minutes. 2 hours after the 30-minute mark, Mestinon wears off. I don't even need to look at a clock to know when I need more!

This is the point where doctoring can be dangerous to MG patients. Hit them with gobs of steroids, expect that to work right away, decrease dosage of Mestinon, and hope for things to improve. Yeah, never works. Steroids can make someone worse before they are better.

I'm not a doctor, but I would give you IVIG again on a regular basis, up the Mestinon, and withdraw the steroids before your adrenal glands completely shut off (they don't need to work when a drug is doing that job for them!). Arrogant of me, right? ;)

When are you going to Florida? I hope you will call the neuros there, and find a true MG expert. Be careful on the trip there. I wouldn't exactly call your symptoms "stable MG."

Good thing that you're smart! We need to be our best advocates while doctoring, even if doctors don't like that. :cool:

:grouphug:
Annie

Thanks again for your insight and expertise! I think he took me off of it because I never noticed a difference in my symptoms after I took it, so he wanted to see if it was even working for me. Today, I didn’t talk to him, just received a message via the patient portal, so thought I’d try it today, then message him tomorrow.

Depending on how I am doing, we plan to go to Florida December 31st.
Again, thank you, you’ve been so helpful!

Quote:

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!

Hi!
I was diagnosed this past August. I started on Prostigmin and after I completed my CT of chest for Thymus I was started on Cellcept (I had steroids with my chemo and begged not to take them again!). He ordered IVIG (I asked for it too). I was an infusion nurse for over a decade and gave IVIG almost exclusively. It has worked for me; but then again I knew what I had. I had treated a lady with Ocular Myasthenia Gravis for over 7 years. I went to her neurologist appts. and studied her labs. I developed stacked double vision last January and knew what was wrong. It took me from Jan. to Aug. to get to a neurologist who would treat me! Who would listen to me!

IVIG provided by specialty pharmacies provide financial waivers to patients who cannot afford the copay. I know a company who may offer you one. You can PM me for more info.

IVIG is the drug that will control OMG. I would refuse the steroids on my past experience and knowing that they cause many side effects.

Hi! I’m sorry about your diagnosis as well. How sadly ironic that you gave IVIG treatments for a decade.

Thank you for the information.
Kristi