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...
I haven't written a topic in a while and that is because I have been struggling with having IVIG 5 days every 2-3 weeks and still not doing well. Then, my neuro tells me he believes I have LEMS in addition to MG and I am barely starting to understand what that even might mean for me...to be hit on both ends of the neuromuscular junction continuallly, and I start to slip into a crisis.
My insurance would not approve an expedited IVIG and I was deteriorating too fast, so my neuro asked me to go to the hospital. It was a good thing he did. I got worse before I got better, since it took a couple of days for IVIG to start to shift things for me.
My breathing got down to -15 on my NIF (negative inspiratory force). If you ever end up in the hospital, that is the test they do bedside for your diaphragm function. They want to take your best score but your worst, or fatigued # after 3 attempts, is the most impt. It shows if you can sustain breathing function. I found that you have to teach each person who shows up, unfortunately.
I lost the ability to walk without a walker the day I went in but by day 2, I couldn't even use the walker because my arms were so weak. My hamstrings, biceps, triceps, hands, quads, and hip flexors were all affected dramatically.
I was still using the walker when I got home on Saturday but regained my walking function late yesterday...IVIG is the biggest miracle of my life! My NIF is over -40 now, which is normal. They tested my pulmonary function at the lab too and all were normal except the diaphragm ones which were around 20% of predicted value. An old test of mine showed 120% of predicted, so major problems. I needed oxygen after testing and for a couple of days, until IVIG started to turn that around.
I had to be very vigilant while in the hospital about nearly everything. They almost gave me antibiotics accidentally one morning when someone confused my medical record with another patient's!
My electrolytes were out of whack and I am supposed to follow up on that, so I am wondering if that played a role in all of this. They have never been off before.
Anyway, if you have any ?'s about breathing or exacerbation or what it is like, I am happy to answer them.
debra
My insurance would not approve an expedited IVIG and I was deteriorating too fast, so my neuro asked me to go to the hospital. It was a good thing he did. I got worse before I got better, since it took a couple of days for IVIG to start to shift things for me.
My breathing got down to -15 on my NIF (negative inspiratory force). If you ever end up in the hospital, that is the test they do bedside for your diaphragm function. They want to take your best score but your worst, or fatigued # after 3 attempts, is the most impt. It shows if you can sustain breathing function. I found that you have to teach each person who shows up, unfortunately.
I lost the ability to walk without a walker the day I went in but by day 2, I couldn't even use the walker because my arms were so weak. My hamstrings, biceps, triceps, hands, quads, and hip flexors were all affected dramatically.
I was still using the walker when I got home on Saturday but regained my walking function late yesterday...IVIG is the biggest miracle of my life! My NIF is over -40 now, which is normal. They tested my pulmonary function at the lab too and all were normal except the diaphragm ones which were around 20% of predicted value. An old test of mine showed 120% of predicted, so major problems. I needed oxygen after testing and for a couple of days, until IVIG started to turn that around.
I had to be very vigilant while in the hospital about nearly everything. They almost gave me antibiotics accidentally one morning when someone confused my medical record with another patient's!
My electrolytes were out of whack and I am supposed to follow up on that, so I am wondering if that played a role in all of this. They have never been off before.
Anyway, if you have any ?'s about breathing or exacerbation or what it is like, I am happy to answer them.
debra
Will
- Ross
- Ross
debra
- Ross
Annette
I don't think I have any issues with exacerbation of late, but there are times when I feel like I can't get a full breath. It doesn't matter what I'm doing. Its as if it does not take much for me to get out of breath when I'm doing something that normally would be easy for me, such as playing with my kids or exercising (I have to keep it light.) I've never been hospitalized for breathing issues and I don't have asthma, so I don't know exactly what an exacerbation would be like. With the way things have been lately I feel it would not take much for things to get bad quick.
I don't think I have any issues with exacerbation of late, but there are times when I feel like I can't get a full breath. It doesn't matter what I'm doing. Its as if it does not take much for me to get out of breath when I'm doing something that normally would be easy for me, such as playing with my kids or exercising (I have to keep it light.) I've never been hospitalized for breathing issues and I don't have asthma, so I don't know exactly what an exacerbation would be like. With the way things have been lately I feel it would not take much for things to get bad quick.
Thinking of you and sending lots of healing energy your way.
hugs
sherry
PS...I didn't know you had an art webpage.
Always great to hear from you. Hope you are having a super day!
TJ
My blood gases were low on the Co2 and the o2, and at night they are down to about 83 to 90 percent for 80 percent of the time? Had the sleep study, but still need to do the cardio stress sono.
I haven't even gotten a diagnosis yet. I just worry that they will piddle around until something happens.
I don't have a great record in being assertive with doctors, let alone my family jumping in. I am so sorry, and scared. I just went through six ect treatments for which they put you out for each one.
I thought surely that proves that I don't have MG but something else, but thinking back now I realize that with each treatment I grew weaker and needed oxygen more afterwards.
I finally refused more, I was supposed to have two or four more. I COULD NOT GET UP ALL DAY. I wasn't sleepy, just felt very sick and tired and surreal. Do any of you others feel like you are a little in a dream state, but very unpleasant. My whole head and back of my palet feel like they are tingly, like chewing ice gum.
Bee, I DO NOT INCLUDE YOU IN THIS STATEMENT. QUITE THE OPPOSITE, but dr.s are really starting to scare me, some. Art, I am thinking of you and thank you for sharing this. I think this is helpful to me, and I am sure to others. It is so good to be able to function and get all this info and support. I really missed it.
Love,
Cathi
I wish you better days ahead my dear.
Larissa
I wish you better days ahead my dear.
Larissa
You said you could answer questions about breathing:
I have general MG, but more sever bulbar and ocular MG. I seldom feel it in arms and legs.
That said... I went for ten sessions of plasmatheresis (similar effect to IVIG) but they remove anti-bodies from my blood. And I was great, symptom free. But i knew it would not last, as these effects are only temporary. It should've lasted a month, then slowly get worse over next 6 months when I would be due for more plasmatheresis. The worsening would include more bulbar weakness and slight eye-drooping in left eye.
Unfortunately a week after plasmtheresis, I was struck by gastroenteritis. And i had to be hospitalised for dehydration. Because i had non-stop diarhea and vomiting for 6 hours. When I say non-stop, I mean literally. Sometimes I couldn't even get a chance to breathe in between throwing up.
Usually gastroenteritis is not so severe, but my thoughts are that the TEN plasmatheresis sessions, weakened my immune system so much that it couldn't deal with the infection at all.
According to my experience with infections, my MG symptoms which flared up during gastroenteritis, should have cleared up a weeek or two after infection clears up. But it hasn't.
It has now been 3 weeks post - infection, and I am worse than i have been in a year. I even feel it more in my arms these days. It seems I get worse by the day.
The wierd thing is that MG usually worsens later in the day.
I seem to have the worst of it in the morning and it gets slightly better in the afternoon. Probably my mestinon dosage could be off here.
My Question is: My bulbar muscles are quite weak now, whre i can hardly chew and swallow. When I do eat, i go into a panic because i imagine my throat is closing up.
how can we tell if breathing is affected? Is there a self-test we can do?
thanks for your advice
Fatima