Ella Guthrie
Forum Replies Created
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My ex-husband recently said to me, “You self-diagnosed yourself with that disease because you were studying it in nursing school.” That’s the understanding I got from him (we were divorced). I knew about what happens at the neuromuscular junction with MG, but we didn’t study how MG affects ones body and life. I have mild generalized MG which can get into serious MG. I know the triggers and try to avoid them, but generally I do well, as long as I take the proper care of myself. Still, I’ve seen neurologists who doubted my diagnosis. I saw them only once. I just keep my mouth shut and live my life. Fortunately, I have good neurologists now who take good care of me.
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I avoid hot showers as heat definitely breathing problems for me. I learned a lesson the hard way about 15 yrs. ago. I went from an outside temp of 96 degrees into a building that was no more than 66 0r 64 degrees. Very cold. it was for a doctor appointment, so I couldn’t leave. After I left the building, I became aware that I was short of breath. I got worse and after a couple of days I went to my doctor. She was very concerned, afraid I had a pulmonary embolism. I didn’t but she told me to go to the emergency room for treatment. This SOB lasted several mos., by gradually got better. I avoid hot showers and don’t spend much time outside in the summer when the temp. goes into the 90’s.
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I have been on IVIG infusions for about 3 1/2 yrs now. I had to have a port put in because only my right arm can be used to blood drawing or inserting needles for infusion. It’s much better with the port, as I have 4 days of treatment every month. Sometimes by the time I am due for the treatment, my eyelids are drooping heavily, halfway down or more, and I am feeling very fatigued. After treatment, sometimes, I am very tired and sleepy; sleeping the rest of the day and all night. Repeat the next day. Then I am good, with eyes wide open and feeling more energetic. Have had no bad side effects as have been described above.
God bless you all and best wishes for better outcomes.