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
I am so glad you are starting to feel better. Holy Cow lady,, how are you doing processing all this? Is the IVIG to continiue?
Glad you have the art show but please be very careful not to exhaust your self further.
Let me know how you continue to do.
Yes, I also have found on the NIFF/ PIFF- every tech has to be shown how to do it for MG vs asthma patient. Glad you were on the ball with that or they can throw you into worse respritory probs doing that incorrectly!
Hugs
Jeannie
Fatima: please read the info on "breathing self test" for learning how to test your vital capacity. The only problem is, my vc was moderately low but my negative inspiratory force (the diaphragm) was VERY much affected. The only way you can test that is a small, hand-held mechanism they use at the hospital (that you can take home). If you are having significant bulbar symptoms, that is not a good sign and an infection can cause a downward spiral in MG. You need to call your neuro.
Jeannie: Thanks. I am taking it one day at a time and IVIG is supposed to continue at every 2 weeks now, if my neuro can get the authorization through before I am in trouble again. I am very strong again right now. I went from absolutely no resistance in hamstrings, quads and neck to very strong in a few days. My breathing is totally normal again. IVIG is a miracle for me but it doesn't last too long unfortunately.
How do you get through it? People keep telling me how strong a person I am but I think I don't have many other options, so I just am dealing with each piece as it comes. That is all anyone can do.
debra
Sorry you had to go through this and spend your energy protecting yourself in the hospital. It's hard enough to deal with one chronic health problem let alone two. I'm glad you're doing better now and hope you continue to improve.
Take care,
Rhonda