Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Friends -
I was at a motorcycle rally last week with my closest buddy, Tom. Besides sharing time motorcycling, we have become as brothers since meeting twenty years ago as fledgling economists for the state. Tom is my executor and has power to execute on my living will.
When at the rally, another friend with us asked about my time with MG, Tom told him the story of my MG crisis and coma of 3-1/2 years ago, and at a level of detail he had previously witheld.
In December 2007, I was admitted to a major medical center hospital through the emergency room for having difficulty breathing. My MG had become severe in response to some serious walking I had done a couple of days before. I had walked - as I had so many times before - from Grand Central Station at 42nd Street to 78th Street on the west side, down to the Trade Center site, then back up to Grand Central. The total walk was something like 8 to 10 miles, certainly not so demanding a walk as to substantially weaken me, but it did.
Thirty-six hours after admission to the ICU, in a period of 15 minutes, I went from resting comfortably - though with somewhat distressed breathing - to full crisis. I was unable to talk, unable to alert nurses the need to intubate me, and then lost all ability to breathe. All went dark until I awoke 7 days later after being in a deep coma.
My buddy, Tom, told this story, as he had before, but he added that his discussion with the attending physician was more descriptive than he had previously told me.
Tom arrived on the scene, for his daily visit, expecting to find me improved from the previous day. Instead, he found me surrounded by nurses, the doctor and aids, all huddled over my bed. Upon finding me unconscious, intubated and handcuffed, he asked the attending what had happened and he explained that I had gone into crisis and had to be intubated. This I already knew. Tom then asked him how serious was the situation and the attending said that if he hadn't been in the next room, the outcome would have been very different. I'd have been dead. That I was within about 90 seconds of death.
My point here is that our disease is serious stuff. When I first came down with symptoms, many were simply a nuisance. Things got worse and I really didn't want to take serious meds. I fought that all the way. My neuro wanted me to see a surgeon to have my thymus removed. I refused (and have never even looked at my thymus...and never will, let alone have it removed). But I did take the drugs: prednisone and CellCept. I had had PLEX 17 times and IVIG. In the end, none of that mattered. The CellCept was totally ineffective and I switched to Imuran. The prednisone dosage was way too small at 40mg, so I went to 80mg. The PLEX and the IVIG were temporary fixes, only.
Take from my story what you will but always remember that this disease is truly serious and can kill you. Be prepared. WHENEVER, if ever, you experience breathing difficulty, IMMEDIATELY seek medical help. You may have less time than you think! In the meantime, enjoy every day to the fullest. For me, that means riding my motorcycles or photographing the world with my view cameras or my Leicas, or making prints in my darkroom.
Curt
I was at a motorcycle rally last week with my closest buddy, Tom. Besides sharing time motorcycling, we have become as brothers since meeting twenty years ago as fledgling economists for the state. Tom is my executor and has power to execute on my living will.
When at the rally, another friend with us asked about my time with MG, Tom told him the story of my MG crisis and coma of 3-1/2 years ago, and at a level of detail he had previously witheld.
In December 2007, I was admitted to a major medical center hospital through the emergency room for having difficulty breathing. My MG had become severe in response to some serious walking I had done a couple of days before. I had walked - as I had so many times before - from Grand Central Station at 42nd Street to 78th Street on the west side, down to the Trade Center site, then back up to Grand Central. The total walk was something like 8 to 10 miles, certainly not so demanding a walk as to substantially weaken me, but it did.
Thirty-six hours after admission to the ICU, in a period of 15 minutes, I went from resting comfortably - though with somewhat distressed breathing - to full crisis. I was unable to talk, unable to alert nurses the need to intubate me, and then lost all ability to breathe. All went dark until I awoke 7 days later after being in a deep coma.
My buddy, Tom, told this story, as he had before, but he added that his discussion with the attending physician was more descriptive than he had previously told me.
Tom arrived on the scene, for his daily visit, expecting to find me improved from the previous day. Instead, he found me surrounded by nurses, the doctor and aids, all huddled over my bed. Upon finding me unconscious, intubated and handcuffed, he asked the attending what had happened and he explained that I had gone into crisis and had to be intubated. This I already knew. Tom then asked him how serious was the situation and the attending said that if he hadn't been in the next room, the outcome would have been very different. I'd have been dead. That I was within about 90 seconds of death.
My point here is that our disease is serious stuff. When I first came down with symptoms, many were simply a nuisance. Things got worse and I really didn't want to take serious meds. I fought that all the way. My neuro wanted me to see a surgeon to have my thymus removed. I refused (and have never even looked at my thymus...and never will, let alone have it removed). But I did take the drugs: prednisone and CellCept. I had had PLEX 17 times and IVIG. In the end, none of that mattered. The CellCept was totally ineffective and I switched to Imuran. The prednisone dosage was way too small at 40mg, so I went to 80mg. The PLEX and the IVIG were temporary fixes, only.
Take from my story what you will but always remember that this disease is truly serious and can kill you. Be prepared. WHENEVER, if ever, you experience breathing difficulty, IMMEDIATELY seek medical help. You may have less time than you think! In the meantime, enjoy every day to the fullest. For me, that means riding my motorcycles or photographing the world with my view cameras or my Leicas, or making prints in my darkroom.
Curt
Thank you for sharing your story, and your advice!
Where my condition is in a fairly rapidly progressing state right now I needed to hear that from you.
I, like I have noticed you are, like to stay on the positive side when it comes to "living" with MG.
I have struggled a lot lately with the issues of what I can, should, want and am able to do. I am more likely to go to the hospital "too late" than to "be cautious" with my symptoms, and DO need to take MG seriously as I ride this ride.
When I have spoken to friends and family about MG over the past couple of months I have TOTALLY sugar coated the heck out of it! I found it a lot more challenging to get help with my kids when I needed to go to the doctor and needed help. This did not work for me! I have had to reteach everyone about MG from a serious standpoint and have had more people step up to the plate to be there for me and my family since then.
It is challenging to find the balance between wanting to believe everything is going to be alright and knowing that there is a chance that it might not.
Positive but Serious... that is how I will attempt to conduct myself. Except with my children, of course! They should not feel the burden of the more serious possibilities!
I really appreciate your insight and wisdom! I hear you and you have made a difference!
Thanks again, Becca
~sherry
or are in any way tempted to encourage someone to wait,
wait for transport,
wait for worsening condition,
wait to convince someone else it is serious--IT IS SERIOUS.
That some members have survived the wait doesnt make it any less dangerous. We dont hear about the ones that did not.
Going in without all your information and an advocate is asking for trouble, but not as serious as not getting there. GET THERE: we need all the links in our Life Line.
Love, b.
But, I am guessing I am one of the people you bumped this for. Because of people's concerns about my dysarthria thread, I now have my Neuro on speed dial and his hospital ready to go on my GPS. I also have my stuff packed, including three pages of details about my history, meds, etc, and ENT notes. ASAP, I will add other specialist notes, the bad meds list, and I have that manual printed out that Ross mentioned. Last, but not least, I have been in touch with Saysha, my local MG buddy, about what is going on with me.
I have an idea, b! What if we put together a comprehensive check list for preparing an effective emergency plan? I think this is just the sort of thing you enjoy?! Curt would be proud of us for doing that, I think.
Thanks for sharing, everyone!
Rosie
I think you know about the Links Group at the bottom right hand of the page. There is a section on breathing and the single breath count and another on Guillian Barre and MG study. If after a deep breath you can't count to twenty out loud, that is 911 type respiratory distress, but a falling single breath count is warning as well, since we tend to go down fast.
What you need to take to the hospital is in a separate discussion which includes the Manual, the contraindicated drugs, a couple of pamphlets for patient and family, a card for your wallet, etc. Most of these things are available on myasthenia.org, the MGFA site, and you can request them, but you can also print them off. There is another link just for the Manual and it has the pages for the areas we most often consult ER, dental, anesthesia, etc.
The most important thing is to find a neurologist that specializes in MG and who will work with you so you never get into crisis situations, sometimes that is not possible, and those of us who are seronegative may go many years without diagnosis and without diagnosis there is no treatment. After a time with MG you have a feel for what your body can dish out in the way of symptoms, what is new, some idea of how much you can do, but when you are new, to MG, you don't have that luxury, every symptom is new and there is often no one place where you can find all the information you need. You don't yet have a feel for your medications. That is where it is great to have a responsive neurologist, but sometimes that is also a luxury we don't have, but we have this group.
When you don't yet know your MG, and even when you do, every breathing problem is potential crisis and can go bad fast. You may notice with other muscles that they work pretty well until they don't, when that muscle is your diaphragm that gives out, you are in trouble.
So that's a long answer saying it's already there. We have no way to keep it at the top of discussions so we made the Links Group. You don't even have to join to see all the information, there is a lot more there, so be sure to "view all." We try to tell every new member about it and the description of what it is about is there.
Aspiration and respiratory collapse are our greatest enemies. May you never have either. b.
What a reality check to read Curts story especially as he is no longer with us
So far I have been very fortunate not to have any breathing problems but I understand its not something I can discount. Thank you for the preparation.
Gez
What a terrific memorial!
Curt's own words - reaching out to us, once again.
I joined this support group, 1 year ago today.
(Thank you - whoever it was, that reminded me! Bless you!)
I joined DS, after meeting Joe Fodor -
- and having him recommend DS to me.
Compared to many of you? I'm still a newbie (in many ways).
Although I'm not - a newbie with MG - and its neurological cousins.
No matter - who we are? MG is a darn scary thing.
To - all of us, here: newbies, veterans, spouses, families & friends.
Curt wrote this posting above, the day after I joined DS.
For our ''newest'' newbies?
(Love you guys! Hate your disease!)
Now you can see why - this guy was important to us.
It's all right there, in his posting above.
Tough, no-dodge-em attitude. But coming from a place of concern.
Sure. Curt ''got'' to us, once in a while. Didn't say he was perfect.
But he was just right - for us.
Still is.
He led by example. As Curt says above?
''My point here is that our disease is serious stuff.''
''Be prepared!''
''In the meantime, enjoy every day to the fullest!''
~sherry
It is there in the breathing discussion. This discussion is linked there. The last paragraph is also in my journal. We could separate it out, and add the quote becca found and find a way to print it at the top of the links page.
I will see what I can do. b.
One year ago today!
I remember that post being such a HUGE turning point for me in the way I live with this disease!
I am so grateful we have come into each others lives to direct, advise support and love!
We are so blessed!
Love, Becca