Thank you, art chick, for the quick response,
They did one plasmapheresis treatment at the hospital and 2 IVIG treatments. Because of hospital rules/insurance, we could not stay in the ICU any longer. He had to be moved to a long term care Hospital and only a few doctors even visit this hospital. Our choice of neurologists is very slim. We were assigned one when we arrived. It is very frustrating because I don’t think he has a strong understanding of MG and other doctors that might have a better understanding don’t visit this hospital.
I am glad to know the mestinon information. I can remember times over the years Dad saying that he felt like his Mestinon dosage was too high or too low. It seems like it a fine line between the two. Do you know how long it takes to start feeling a difference after you are taking the right dosage?
Again, thank you so much for your help.
Quote:
Originally Posted by art chick
I am sorry to hear about your father's situation.
30mg of mestinon is a very, very low dose (a starter dose or if someone doesn't tolerate it well due to GI symptoms) and mestinon is used for MG symptoms, NOT treatment of MG. A usual dose is 60mg every 4 hrs. People can even go as high as 120mg every 4hrs. He may just be shaking from being so weak and trying to use a muscle that has no strength. Truly, mestinon is not going to be the big concern here but lowering his dose lower than he takes at home is not a good idea.
He needs MG treatment if he is in MG crisis. And pneumonia is very serious for MG. Since he responded well to plamapheresis in the past, have they considered doing another exchange for him? There is also IVIG. That is a batch of other people good antibodies that they infuse. I don't understand if they have not done any treatment for MG while he has been in hospital.
Since he is able to squeeze your hands, perhaps he could communicate by writing??
Wishing you all well!!
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