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...
Good morning DS family,
I pray that everyone is having a good morning. First I would like to Thank everyone on this site for the valuable information they provide by sharing their stories and experiences with this snowflake disease. It has proven both valuable, inspirational and life saving for me. God Bless you all.
I am home after having been hospitalized 05/27 -06/17; 06/26-07/23;08/03-08/11 from crisis. each time I was on a vent for 14 days. The third stay ended with a trach because the ICU neurologist felt that if I had to come back , he did not know how easy it would be to ventilate me. After much prayer, and objection, I finally gave in on July 12th. Might I add, a feeding tube was also added to to the weight loss of 34lbs. I received Plasmapheresis on both of the first 2 stays ( first time ever). They tried the IVIG but I must have had some kind of reaction to it because they stopped it on the 2nd day. My stay in the ICU was frightening to say the least! Being awake and on a ventilator is no walk in the park I tell you. I can tell you, make sure you have a family member around the clock their with you because from inexperienced nurses, not washing hands and witnessing the night shift move quite slowly when code blue was called. ( I think they give the nurses between the ages of 20-25 the overnight hours because the day shift were quite amazing) Thank God my family was there every second of my stay. I am now home on 60mg of prednisone, 75 mg of immuran.and 60 mg of mestinon up to 4xday. Next week I will be advancing to 100mg of immuran. To date my strength in my arms and legs have been fantastic, my swallowing and speech is still not 100% maybe 50% at best. Taking most of my nutrition by PEG tube and doing small pleasure eating (very soft) by mouth . Need to gain at least 10lbs before they will even consider removing the PEG tube. Also, will have the trach in until follow up CT has been done to positively confirm or deny Sarcoidosis just in case a biopsy is needed. Trach has not been that bad, since I cut out dairy, I don't have to deal with secretions all day. I just don't want it to be in so long that it becomes a permanent thing. Each day I continue to Thank God for his Mercy inspite of all the pain I endured.
A word of advice to anyone who doesn't listen to their bodies or push their doctors when they feel something Is wrong....Things can go downhill really fast!!!!!!!!! My speech started slurring in August 2012 and by January 2013 it was constant. By March my swallow wing was affected and I had lost 25lbs. Although I had seen the doctors, FP,Neuro and Pulmonologist.. I did not push my neuro to start a treatment plan nor did he insist as I had only been on Mestinon for 13 years. If I had , just maybe I would not have had several crisis at my weakest point.
Wishing you all the best!!!
Trinity419
home since 08/23/13 doing well
I pray that everyone is having a good morning. First I would like to Thank everyone on this site for the valuable information they provide by sharing their stories and experiences with this snowflake disease. It has proven both valuable, inspirational and life saving for me. God Bless you all.
I am home after having been hospitalized 05/27 -06/17; 06/26-07/23;08/03-08/11 from crisis. each time I was on a vent for 14 days. The third stay ended with a trach because the ICU neurologist felt that if I had to come back , he did not know how easy it would be to ventilate me. After much prayer, and objection, I finally gave in on July 12th. Might I add, a feeding tube was also added to to the weight loss of 34lbs. I received Plasmapheresis on both of the first 2 stays ( first time ever). They tried the IVIG but I must have had some kind of reaction to it because they stopped it on the 2nd day. My stay in the ICU was frightening to say the least! Being awake and on a ventilator is no walk in the park I tell you. I can tell you, make sure you have a family member around the clock their with you because from inexperienced nurses, not washing hands and witnessing the night shift move quite slowly when code blue was called. ( I think they give the nurses between the ages of 20-25 the overnight hours because the day shift were quite amazing) Thank God my family was there every second of my stay. I am now home on 60mg of prednisone, 75 mg of immuran.and 60 mg of mestinon up to 4xday. Next week I will be advancing to 100mg of immuran. To date my strength in my arms and legs have been fantastic, my swallowing and speech is still not 100% maybe 50% at best. Taking most of my nutrition by PEG tube and doing small pleasure eating (very soft) by mouth . Need to gain at least 10lbs before they will even consider removing the PEG tube. Also, will have the trach in until follow up CT has been done to positively confirm or deny Sarcoidosis just in case a biopsy is needed. Trach has not been that bad, since I cut out dairy, I don't have to deal with secretions all day. I just don't want it to be in so long that it becomes a permanent thing. Each day I continue to Thank God for his Mercy inspite of all the pain I endured.
A word of advice to anyone who doesn't listen to their bodies or push their doctors when they feel something Is wrong....Things can go downhill really fast!!!!!!!!! My speech started slurring in August 2012 and by January 2013 it was constant. By March my swallow wing was affected and I had lost 25lbs. Although I had seen the doctors, FP,Neuro and Pulmonologist.. I did not push my neuro to start a treatment plan nor did he insist as I had only been on Mestinon for 13 years. If I had , just maybe I would not have had several crisis at my weakest point.
Wishing you all the best!!!
Trinity419
home since 08/23/13 doing well
I think it is important for new people to know how serious this disease is.
I didn't understand the seriousness when I was first diagnosed. I too was on a vent and serious hospital stays.
Anything we can do to prevent others the pain of near death is worth it.
I hope you go uphill from here.
Ann
I'm with Ann - thank you for posting.
Your experiences with repeated myasthenic crisis is so eerily similar to my own - that it gave me the shivers.
Like you, I also found - that having a family member in constant bedside attendance - was one critical component in my eventual recovery.
(Not all of us - are so lucky.)
I'm not afraid of death anymore, nor the spiral of dying.
What I am - afraid of?
Just like you - it's the inexperienced nin-com-poops - who have no business working in medical units like an ICU, where life-saving skills and good decision-making are critical.
(I recently received a private-message from another DS Friend. With the same story to tell: inexperience and incompetence in an ICU, dealing with a life-or-death MG crisis.)
In my case, my wife stood guard and watched over me, staying night after night after night, propped up in 2 chairs.
I'm gonna let her read your account above. (... poor thing ... I'll probably have to pick her up - off the floor, when she's done reading ...)
PEG-tubes.
All my doctors, along with myself - kept my PEG-tube installed, for 7 and 1/2 months.
As my ability to swallow improved? And my entire GI-system recovered - from being trashed by super-strength antibiotics? (recovery aided by introducing Jevity 1.2, through the PEG-tube, and later by drinking the Jevity, diluted with water.)
Probably? My doctors and I kept the PEG-tube in, for longer than was necessary. (The tube was kept in, as a back-up, in case of a relapse.)
The PEG-tube installation was botched, from day one - and 3 different repairs or replacements - were no improvement.
As a result, the site of the stoma became a point of chronic infection.
And that infection, slowed down my overall recovery. Now, after Peg-tube removal? Recovery is proceeding better, baby-step by baby-step.
As soon as you feel confident?
You may want to think about having that PEG-tube removed.
Don't hurry.
Just don't keep the tube in place, any longer than you feel is necessary.
Glad you are home!
Hope your recovery goes along steadily!
Big hug - Ross
As I read about your experiences I will have admit a certain amount of fear. I know for me MG has come on hard and fast since April and I'm now having some at times significant issues swallowing and breathing in addition to weakness in my legs and hands. The round of IVIG in June really helped and I'm scheduled for another round in September. I have had a handful of occasions where it's been hard to chew, talk, either my voice gives out or I can't form the words well, my voice feels thick and slurred.
From the sounds of it these symptoms sound similar to what you have experienced. Any advice for things to watch out for to advert or preempt a crisis?
Certainty I'm glad your on the mend and back home, I can't even imagine being in the hospital that long, especially in the ICU.
:-)
Joe
A word of advice to anyone who doesn't listen to their bodies or push their doctors when they feel something Is wrong....
And thank you for sharing.
All the best to you,
Calmday
I left the ER early to get my IVIG treatments. These treatments worked for me, but they are dangerous, IMO. There is a lot of fluid real quick - at least I think that is part of the danger.
Good luck with your recovery.
I have to comment on Ross again. Thanks for your sharing too. I hope I can learn something from you both.
You have been through an unbelievable amount of stress and I hope for you now have healing rest and with family around you improve every week. Marie
Thank you everyone for the reminder that our symptoms can very quickly and unexpectedly take a turn for the worse.
I needed a kick in the pants today.
Thank you.
hugs to all,
larissa
I'm brand new to this and I think - I don't know now - if I'm diagnosed or not. EMG/NCS both indicated mild MG in my left arm, but there are other symptoms of extreme fatigue and weakness throughout my body.
I have an appt with a young neuro who did his residency at UTSW MG program. I'm so confused, and becoming frightened, because when you read about MG in articles, they never state the degree of severity everyone here has experienced. The articles make it seem like a walk in the park almost, 'your muscles weaken with repetitive motion;' that is not what I'm learning from courageous people like you who care enough to share, warn, and encourage.
I'm amazed with the depth of compassion and passion I've encountered at DS. I'm just in a whirlwind right now.
Bless you, Trinity. God is powerful and if he doesn't cure us, he will give us the strength, grace, and FIGHT to never give up!
Barbel, Debbie, Joe, Calmday, Dan, Marie, Larissa and Elinor- Thank you all for you well wishes. I pray I did not freak anyone out with the details, which I did not give a full account of, but just enough to "Wake" those up , who push too far and don't listen to their bodies.
Ross- Im sure there are some horror stories you and I could share. I too am no longer afraid of "death" but I continue to Thank God for continuing to allow me to be in the land of the living. I pray that your recovery is going well and uphill. Do you get spasms from the Peg tube on occasion? It is the most excruciating pain for 10-15 minutes. Also, you are so blessed to have a life partner/wife who was able to be there with you through the terror of ICU stay.
Trinity419
Babette- My initial symptoms were typical- started in the eyes and in 2 years became generalized. No problems with the eyes, affected the armns and legs with repetive motion. Once I got pneumonia and it wasn't treated for months, things went downhill along with pushing myself mentally and physically. I pray my post didn't alarm you too much..I take full responsabilty for my crisis. This disease is manageable.
Best wishes
Trinity419