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
I am so thankful to have you guys in my life...makes every day easier knowing I am not alone on this journey. ((HUGS TO EVERYONE))
He won't use any of my video's of my breath count though, but for me I know that's showing my decline. I think I may let the fire dept./1st responder a few blocks away know my cell #, condition, I live alone, and my studio is in the back of 2 homes. I read that advice on here too. I can't thank Curt and all of you enough for your help! Marina