[Janet Kelley]

Husband came in to MMC 13 days ago, crisis situation, did not have to ventilate, had 5 plasmspheresis - every other day - then two IVIG one day apart. Lungs looked abnormal, all tests (endoscopy) came back normal, no pneumonia, infection, bateria, or cancer. Barium swallow test yesterday they saw aspiration, did again today w/many docs and looked normal. Still very weak, 4.5 of oxygen through bypap machine. On mestinon, prendisone, cyclosporine, etc., etc., Anyone else been there?????? We seem to be at the end of our ropes here!!! Very frustrating.

[Maxwell'sMom]

Hi,
i just wanted to reach out and tell you I'm so sorry you two are going through this. I know it's frustrating. If it's any comfort, there are others who have gone through these valley's as well. Sometimes, it just takes time to feel better. And even then, he may not ever be completely well.
So many things can come into play with in our bodies. At the risk of sounding like a mother hen, has he had his potassium levels checked?
If mine are just a little low, ( on the low side of normal) I will still get weak.
Plus, have you checked to make certain that his food intake doesn't contain anything that would exascerbate his MG? Quinine in water will, and there is a whole list of chemicals that are in foods that can cause a problem.
Unfortunately for our tastebuds, eating natural is basically the best for us.
Same with meds, and vitamins, one has to be very careful.
Hope things will turn around soon.
Love Lizzie

[redtail]

Hi Janet,

wow sounds like you are having a trying time at the moment.
Cant say I was ever this bad, but do agree with Lizzie, get his potassium levels checked, mine are low at the moment, and that brings on more weakness than usual.
Hope things start picking up soon.
take care
redtail

[Janet Kelley]

It's really nice to have this forum to read. He's been home from the hospital for 3 weeks now - had two more IVIG's last thurs & friday - he had a terrible reaction and spent last night in the local hospital. We are now waiting for approval to try Rituxan for MG - (he had one treatment at Maine Medical Center last month w/no bad side effects!!!) there have been some case studies that look very promising for him. The drug has not been approved by insurance ($6K per treatment) and I believe it would be 6-7 treatments 2 weeks apart to start . His doctor is also willing to do a paper (study) if the drug company will pay for the medicine.