MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Rheumy sent me to balance guy at ENT Center after my latest fall. I had NO idea what I was in for, evidently so I would actually go. They said I had to have a driver as they were going to run some tests that would make me dizzy. I was put in a new age chair, had to wear these huge computerized like view finders. Looks like those virtual reality things.
Things started off pretty good. Had good times with my daughter imitating Hannibal Lector and all, kinda looked like a face mask as well. It got progressively worse, and by worse I know what Guantanamo Bay, Sensory Depravation and Mind Washing are all about now, I really get it.
I was in complete blackness this whole time, having to hold my eyes open, as they spun me this way and that way, snapped my head back and forth, tipped me this way and that, in the end I did not know if I was upside down or right side up. Then came the water torture...
Finally she says this concludes this test. You now have one more and then you're free to go....Um, No, Not doing one more test, going home now Miss Dominatrix.
After much cajoling and reassurances of no masks, no blindness, no torture chair, no water torture, I consented. This one they strapped me into a carnival looking contraption with one of those floors that move, sway, go uneven, etc., while I was standing, eyes wide open.
Test results? Inconclusive.
Oh yeah, I also got a huge, nasty infection in my eye that went into my sinus cavity and ear.....started 2 days after these tests.
Next, Super Duper Finger Computer for sleep apnea, which can mess with your balance. Test results? Need another test.....Seriously
Anyway this is the last one in this ongoing saga, the very last one. I have to do a sleep study test and spend the night hooked up. So far this sleep thing is WAY less traumatic. Why didn't they start with this?
Things started off pretty good. Had good times with my daughter imitating Hannibal Lector and all, kinda looked like a face mask as well. It got progressively worse, and by worse I know what Guantanamo Bay, Sensory Depravation and Mind Washing are all about now, I really get it.
I was in complete blackness this whole time, having to hold my eyes open, as they spun me this way and that way, snapped my head back and forth, tipped me this way and that, in the end I did not know if I was upside down or right side up. Then came the water torture...
Finally she says this concludes this test. You now have one more and then you're free to go....Um, No, Not doing one more test, going home now Miss Dominatrix.
After much cajoling and reassurances of no masks, no blindness, no torture chair, no water torture, I consented. This one they strapped me into a carnival looking contraption with one of those floors that move, sway, go uneven, etc., while I was standing, eyes wide open.
Test results? Inconclusive.
Oh yeah, I also got a huge, nasty infection in my eye that went into my sinus cavity and ear.....started 2 days after these tests.
Next, Super Duper Finger Computer for sleep apnea, which can mess with your balance. Test results? Need another test.....Seriously
Anyway this is the last one in this ongoing saga, the very last one. I have to do a sleep study test and spend the night hooked up. So far this sleep thing is WAY less traumatic. Why didn't they start with this?
I have had friends tell me about those tests. Guess they have to mop up a lot of puke! Sounds like fun. (Yuck!)
I went to the cardiologist today and he is pushing for a cardiac ablation. I have put him off for 4 years now. Maybe a few more? LOL! I am to have a 48 hr heart monitor next week. Guess we will see.
Hope they find out the cause of your issues soon.
Mary Ann