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Some Thoughts on Being a MG Patient
None of what follows on this page is of any help to another MG patient other than perhaps showing empathy. What I'm doing here is what used to be called "venting my spleen", although I don't have one. It is clear from the MG boards, MG as an illness doesn't come alone.
I'm obviously not in particularly good health, take a lot of different medications on some complicated schedules, have residual symptoms and I'm hardly an ideal patient. I'm being treated by a bunch of very competent doctors. I'd recommend them based on competence to anyone. I believe they all care about their patients as strongly as I believe at least one has far too many patients. I'm not complimenting them for fear they will find this page. From what I can tell from discussions with them, there is little chance they will find the Internet.
I want to make it clear, my current Doctors have done very well for me and I am grateful. "But" ...I have come to realize, they "ain't been there, done that." What I am trying to say is unless one experiences the disease personally, there are some problems one just don't have a clue about. I'm saying this partly in guilt. I used to visit an old gentleman who did everything he could to reduce the amount of medication he took, would appear to ignore medical orders, go through mood swings, had little endurance, ...well you get the idea. I didn't at the time.
Mix-up in medication: A few recent Doctor's comments precipitated this page. The first was a reaction to the error I mentioned on the previous page. I buy medication in bulk and transfer the pills to smaller standard drugstore containers. I do this because my system of keeping track of what I took is based on the position of the containers on a shelf. All containers are properly labeled. The error was I poured medium size round white Prednisone pills from its bulk container into the Mestinon larger round white pills container. I then took the wrong pill combination for weeks and paid the price. Two of the doctors expressed frustration at the error and cautioned me not to do it again. Excuse me? Their cautions were professional, however, my frustration level was increased by the unnecessary condescending cautions. What they can't understand is how someone who takes 7 or so different medications that are white pills with varying sizes, subtle differences in shapes and textures could make such a mistake. They probably also don't know generics are not consistent in shape from brand to brand. (FYI, I also take two different green ones and one capsule).
Mix-up in medication schedules: Along the same line, I'm sometimes not sure if I took a specific medication or not. No doubt I therefore skip at times and at other times unintentionally take extra. I take some 1/day, some3 times a day, some before and one after meals, one on alternating days, one on Mondays, Wed, and Fridays, some on an empty stomach, some with food, one after a meal, some before bed. When I suggested changing the scheduled of Prednisone, as it was being reduced, instead of the amount on the existing schedule, to co-ordinate the schedule somewhat my good Doctor lost his cool. He's probably right about the correct schedule but no empathy for the problems in keeping track of all this. Yeesch!
Double vision: I still have some, fortunately only peripherally. The image can appear as two of something, and this situation is easy to deal with. I may not know which is the correct one but I know what it is, if it is moving, and in what direction. I also know the problem with the image is double vision and if I want to know more I can close an eye or move my head and all is well..ish. In other words, I immediately know what is wrong and can deal with the fallout instantaneously. Furthermore, at those angles, it rarely matters which image is the correct one. Other times the two images are so close they are just a blur. I become aware something is happening in the peripheral field but don't know what. There is a period of processing when the mind is trying to figure out what is happening. It doesn't immediately determine the problem is double vision and it certainly doesn't correlate the image. A Doctor's suggested solution, "Close an eye." How simple. Of course the problem is lack of comprehension and until the conclusion is reached the problem is double vision, no corrective action can be initiated. Maybe I should just train myself to close an eye whenever I don't understand something.
Mental State. My least favorite experience was with the Doctor who has done me the most good. I was 20 minutes late for my first appointment with him. He was polite but didn't let me forget it for several appointments. Why was I late? I got on an Interstate in the wrong direction, had trouble finding the address, and went to the wrong of two identical adjacent buildings. How did I make some many errors? My two eyes were totally uncoordinated, I hadn't been able to chew meals for weeks, I had trouble walking, was exhausted, and was convinced all my systems were shutting down. In other words, I was in both a poor mental and physical state, and easily confused. He must see this condition in many new patients. This is the time to cut a little slack. I remain defensive about going to the wrong building since the new non-MG patient that followed me made the identical mistake. Bad directions perhaps?
Jerold
H Feinstein saftyrma@yahoo.comCopyright Jerold H. Feinstein, PE 2000 All rights reserved; contact for permission to use
This page was last updated on 10/16/00 and is located at http://geocities.datacellar.net/CapeCanaveral/Hangar/6056
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