I went the better part of two years barely able to walk . I had been to see a neurologist with a "wait and see attitude" . One sunday my appendix pops , I end up in the hospital and because of some unexplained respiratory problems , end up seeing a team of neurologists . The illness gets diagnosed as LEMS .
I am getting treatment and am doing better . Hopefully you won't have to go through anything that extreme . Hope you find your way to better days .
jim
Quote:
Originally Posted by winic1
got sent for blood test and emg because of having right eye lid try to drop itself closed, and positive "ice test". along with lots of eye problems (muscle/control related) which could also be (and have been)attributed to other conditions. lots of physical weakness and problems that also could be other things (from fibro to leftovers from massive car accident).
Tests were negative. so doc says end of story. if it's not on paper, you don't have it. if you can't test for it and get it on paper, you don't have a problem. period. Great! except for the part where all the symptoms continue and there are no answers. However.....
Have been on an eye drop containing timolol for several years. pharmacy recently switched to a different generic, and noticed I was getting a burning red face shortly after using the eye drop every day. ophthalmologist said, stop using it and see if it changes (and have to go back in 3 weeks for eye pressure check to see if we need to continue/replace it). So, stopped eye drops containing timolol, which is on the MG hit-list.
Red face stopped, BUT SO DID THE DROPPING EYE LID AND SOME OF THE EYE MUSCLE PROBLEMS. In fact, eyes have not been this wide open in a while.
Sent message in to both ophthalmologist for the glaucoma, and ophthalmologist for the eye muscle thingies. No answer from either. (big surprise, unfortunately not.)
So....has this been just a side effect of the timolol eye drops, or did the eye drops exacerbate what really is MG despite negative test results? Do I pursue this, or just go in for my eye pressure check in another two weeks and simply work on finding another eye drop that is okay for me?
In a few weeks I have a regular check-in with cardiologist. Turns out one of the two meds she has me on is also on the MG hit-list--Verapamil. So do I need to tell her we should switch me off that one, too?
Since the blood test and emg were negative, I cannot think of a single doctor I have or know of in the area who will consider any of these things and help me figure this out. I am on my own, again. And eye problems limit my reading/internet to just minutes at a time, so researching on my own is pretty much impossible at this time, so hoping someone here can help provide info.
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