I had my first crisis after a week end of camping and hiking on the beach in the heat of late Aug/early sept this year. Actually, after an entire summer of every weekend at the beach hiking/swimming in the rough surfs. Didn't know I had MG yet. Had been weak and feeling odd for a month or so but ignored it thinking it was from doing too much at the gym that it would pass. Went into resp. crisis last day and into the hospital for 1st time. Told probable MG then.

2nd crisis was in oct. breathing just kept declining until I couldn't get air to speak or walk at all. No real trigger I can think of, just newly diagnosed and not on proper treatment yet I think.
I hope those are the last for me:)

I don't know the exact numbers but when I awoke from my coma four years ago, I was told only one in ten MG victims ever saw a ventilator. All the others had been given enough prednisone to stave off symptoms.

This is another part of the puzzle: An unfortunate reality of our disease is that if left untreated, many of us will go into crisis. The only known drug to push down the antibodies, in the short term - is prednisone. There's lots of resistance to prescribing and taking this drug (and for some very good reasons) but it has prevented untold numbers of deaths and suffering.

Curt

The figures in the scientific literature are pretty consistent that 15-20% of myasthenic patients have at least one crisis and the average time from outset of symptoms to crisis is 8-12 months. Women are twice as likely as men to have a crisis and the average age of a patient having a crisis is 55-59.

The most common precipitating factor leading to a crisis is chest infection particularly pneumonia. This is one reason it is so important to loook after yourself particularly in winter and to have your flu shots. The next main cause is undermedication which can happen in cases that have not been diagnosed and in cases where insufficient prednisone or immunosuppressant is provided. Overexcertion and "no specific cause" are also quoted frequently.

People with purely ocular presentation rarely have crises.

Hope I never have one , the sound terrrifying.

I was diagnosed in Aug. with MG, had thymectomy in Oct to remove thymoma and then ended up in ICU in Nov for 8 days with pneumonia. I had a fever at bedtime and difficulty with my breathing which I thought was asthma related. Days were ok...took tylenol. On the third night I had to call my sister at 3 am because my breathing was so bad. Ambulance ride to local hospital and life flighted to larger hospital. Being newly diagnosed I didnt realize how compromised my immune system really is. Now I do and am being VERY careful. I don't EVER want that tube down my throat again! :) Cindy

Kimber These are good questions
Gwync you gave me something to think about. I am a woman, 58, and 10 months since diagnosis at least I did get a flu shot for the first time in my life. Hopefully I will be in the non crisis group. I will definitely make a point of pacing myself this Christmas.

Pat

Also heard that it is about 10 to 15% of us, I agree with Cindy, I NEVER want that tube down my throat again - so being very aware of my symptoms,,,,,

I don't remember having the tube down my throat. I was unconscious for 3-4 minutes before they got to intubate me. All was black and silent by that time. I also think they pulled it out of me before I was completely out of the coma seven days later.

ALL of this can be prevented with high doses of prednisone, I learned - much to my dismay - after waking back up.

The thought of crisis is chilling, and should be. My best buddy asked the doc who tubed me how close a call it was. The doc said that in another minute, I'd have been gone.

I almost died because of too little prednisone. I still rankle from the thought...

Curt

This is sooooo frustrating! We need some sort of MG power meter that has a little "you've gone too far" line. We are constantly exhausted and so we have to push to keep going but push too far and you could wind up with a real crisis on your hands.

It worries me that I don't know how far is too far. Today I woke up tired. Showered and got more tired. Reeled at the thought of getting dressed and putting on make-up just to drive 2 hours to have meetings all day and drive 2 hours back. Somehow I pulled myself together enough to do it. I am exhausted and left wondering how far is too far? We can't stop living our lives but......

Kimber

Like you are attempting to "lasso a tornado"?
I understand that!
Listen to your body and your instincts!
I have put others in charge of when to call for help if I need it because I get really angry and stubborn when I can't shake the physical issues. I make sure I am not alone very often when I am not doing well, even if I am simply putting people "on call"... that is something we can control most of the time.
I really believe yo have asked the big question that haunts us all and I look forward to reading more posts! Thank you!
Love, Becca

I know exactly what you mean Kimber. I never know when enough is enough. I decided that I needed to push myself and go to the gym and try to workout. I got dressed and went to the gym, but I was too exahausted to workout after walking up the stairs to the 2nd floor gym. My entire life experience has been that the harder one works, the more one achieves. The MG reality that sometimes working harder makes things worse is foreign.

My crisis resulted in 7 weeks in the hospital, mostly ICU, intubation, and a gtube. However, as a result I was diagnosed with MG. I don't know if all of that would have happened had we known I had MG. Don't you think the percentages of those who have a crisis is lower for those actually diagnosed with MG? In other words, those who have undiagnosed and untreated MG are much more likely to have a crisis.

Marvin wrote: "Don't you think the percentages of those who have a crisis is lower for those actually diagnosed with MG? In other words, those who have undiagnosed and untreated MG are much more likely to have a crisis."

Definitely not. Usually, the progression of the symptoms are such that there is plenty of lead time before a crisis when you are suffering from the most obvious symptoms of MG. Long before you go into crisis, you will present the typical bulbar symptoms, arm weakness and mild respiratory distress. If you are not diagnosed during this period, you are not seeing capable physicians. As poor diagnosticians as the appear to be, the vast majority will have picked up on the MG. I was three years with severe symptoms before having a crisis.

Curt

For those whose MG is unstable, most of us in the first year after diagnosis, becca's advice of always having a back up plan with people who know our condition may help us stay out of the ICU, if not the ER., and as Curt says, with breathing problems we may have to insist on adequate medical treatment. Before I was diagnosed and found I really had to slow down, the acute episodes of weakness could be treated with periods of absolute rest, sitting in a comfortable chair (worth every penny you pay for it), putting up my feet, closing my eyes, and not moving for 5 to 10 minutes on the clock. The first three minutes always drove me crazy, but then would calm down. I suspected that might work because my Dad had MG. The problem with the first year seems to be instability of disease, lack of understanding and treatment, and desire to get back to our old selves the minute we feel the least bit better. b.

Interesting topic, and as usual, many view points.
My experience was that I was diagnosed due to my crisis, and although I had some symptoms prior to it, the onset was rather quick. I had symptoms like a lazy eye lid that would come and go over a two year period. I had MRI scan done, blood test etc, but we never found the cause.
over Christmas last year in a matter of days my speech and lazy eye lid got so bad that I ended up in hospital, and while they were running more tests I went into full respiratory crisis - 5 days ICU, Thymectomy etc etc....

Now I know what to look out for and monitor myself very carefully. Never want to end up intubated again !!

So would I be considered as a MG'er that had a crisis, or not - guess is up to debate, as I most certainly have MG, but was not diagnosed as such till after my crisis.'
This I think also lends to the question of how or why does it take so long to be correctly diagnosed.....the nature of the disease perhaps ?

Chroux,

My husband and I are both doctors and neither of us understand the reluctance of the medical profession to diagnose and treat based on the obvious physical findings! When I feel a little more confident with my doc, I am going to ask him. He is involved with training neurologists and I hope they are going to turn out better than some of the ones we have seen.

b.

I had blood work done this week so I was in the hospital arena, so to say. Just the lights and people put me into a state that I didn't like remembering from when I was in crisis. I think I have really blocked alot out. Yuck. The mental implications from this disease make me want to keep a very positive attitude. Even when I am doing well I sometimes loose it emotionally.
Ann