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 considered just adding the link to Curt's Ghosts and the Horrors of MG, but along with your story, this is a timely reminder of where we can be with MG and perhaps more will read the entire post, so am bumping it up.
Joe,
September can't come soon enough! b.
Our stories are so similar. From September to December of 2012, I kept pushing myself. I was in the middle of a home renovation, hurrying to get finished before the holidays. I was getting plasmapheresis every three weeks but slowing going down hill. By the middle of December I was hospitalized due to worsening bulbar symptoms. I talked the neuro into releasing me after 4 days of plasmapheresis only to be hosptalized again 2 days later. This time my neuro would not hear of letting me go. I spent the Christmas holidays in the hospital with my symptoms spiraling out of control. My neuro was throwing out everything she could think of to get my symptoms under control and to find the cause so I would not end up in breathing crisis. The only thing else she could do was stand by my bed and wring her hands. I was lucky that she was on hospital rotation those first 3 weeks (although I have nothing but good things to say about each neuro that rotated on my case)
A few days before New Years, I could no longer talk and could only eat pured food and drink thickened liquids (my breathing/diaphram was unaffected) By New Years Eve, I could not take either. Around 2 am New Year's day I had gotten up to use the bathroom and when I got back to bed (yes, I had convinced the nurses that I did not need help to the bathroom), I knew I was in trouble and was eerily calm but could not think to push the call button.
An angel of a tech came in right at that moment to take my vitals, took one look at me, took my vitals and immediately called for help. Within 15 minutes I was in ICU and intubated. I agree that it's no fun being awake while intubated, handcuffed (hands tied down) for the first day or two. An advocate that watches over all our care and to not be left alone is so important. Even being in a neuro hospital, MG is rare so many nurses and doctors are not well experienced in our care. Every medicine given should be double checked to make sure it can be safely given to those with MG and our mestinon has to be given on time...even 15 minutes late can have an effect.
I am lucky I did not need a peg tube or trach after extubation. That must all be so scary. My daughter is a pediatric speech pathologist in the same hosptial system I am in and she really advocated for me with the doctors and speech. (I am a retired speech therapist so that helped too) Luckily my swallow returned and I did not have to be re intubated.
I am improving with a few set backs with re hospitalizations for a major bleeding ulcer due to high dose predisone, infected cath line, pneumonia and dangerously low white counts due to Imuran/prednisone. (In May I was hospitalized due to low white counts and would not even be released to attend my son's university graduation) The effects of the meds to get us out of a severe crisis can also make us very sick!
I am finally off of prednisone so my ulcer has healed and I have finally spaced out to having plasmapheresis every 7-8 days. Am waiting for reapproval of rituxin.
All that being said, breathing crisis can come on quickly and it is so important to pay attention to our bodies and not ever get so complacent that we think we will won't have a crisis. (I was 3 years out from diagnosis)
Wishing you wellness,
-sherry
I appreciate you, Trinity. I tend to overdo it, just yesterday, I worked 18 hours just because I wanted to wrap up some projects that have been outstanding. STUPID of me.
I hope you feel better each day!