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 had my. Second treatment last night. First machine broke down and another one had to be. Sent from Atlanta.
For some reason the nephrologist here who is in charge of plasmapheresis did not want them to use calcium while doing the exchange. Probably because my calcium levels were nice and high.
This caused me to become stiff and have muscle twitches and finally my diaphragm had trouble moving for breathing.
The nurse slowed known the treatment and paused it, but I had to have calcium before I continue. Took twice as long to do it this way.
This morning I asked the nurse to please get calcium before we got started. Unfortunately, it was not enough to last the whole treatment. So my muscles all froze up like I was a statue about the last quarter of the treatment. I had buns and abs of steel, but this is not the recommended method.
By the time the hospital nurse got me calcium I was barely able to move my diaphragm at all. They paused the treatment as long as they could without clotting the blood. I appreciated everyone coming in and telling me to take a nice deep breath! I put my cpap on to try to force some air in me. Otherwise they were going to put me on a bipap and I was afraid of what would happen since my entire chest and abdomen were totally rigid. When they put a bipap on me last month it felt like my lungs would pop because I could not keep up with the pace it was forcing me to breathe.
I told her tomorrow I will refuse the treatment unless they hang enough calcium to last the entire treatment before it starts.
For some reason the nephrologist here who is in charge of plasmapheresis did not want them to use calcium while doing the exchange. Probably because my calcium levels were nice and high.
This caused me to become stiff and have muscle twitches and finally my diaphragm had trouble moving for breathing.
The nurse slowed known the treatment and paused it, but I had to have calcium before I continue. Took twice as long to do it this way.
This morning I asked the nurse to please get calcium before we got started. Unfortunately, it was not enough to last the whole treatment. So my muscles all froze up like I was a statue about the last quarter of the treatment. I had buns and abs of steel, but this is not the recommended method.
By the time the hospital nurse got me calcium I was barely able to move my diaphragm at all. They paused the treatment as long as they could without clotting the blood. I appreciated everyone coming in and telling me to take a nice deep breath! I put my cpap on to try to force some air in me. Otherwise they were going to put me on a bipap and I was afraid of what would happen since my entire chest and abdomen were totally rigid. When they put a bipap on me last month it felt like my lungs would pop because I could not keep up with the pace it was forcing me to breathe.
I told her tomorrow I will refuse the treatment unless they hang enough calcium to last the entire treatment before it starts.
I am so sorry you have had these problems, but if there were any question left of the diagnosis that should clinch it! Your voltage gated calcium channels need all the calcium it can get for muscle contraction.
Maybe the nephrologist on charge would benefit from a pamphlet about your illness. I think there is one onthe MDA site. b.
Lorraine
Never had a doctor do that before.....
At least it made me feel better.