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Old 05-30-2012, 08:10 AM
winic1 winic1 is offline
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Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
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I have a list of CT scans and MRI's and ultrasounds since the accident that is several pages long. really.

went to a pulmonologist last summer. Managed to do all their tests, tho it took many tries for one or two before I could do it "right". All the report to the doctor shows is your best run. So he did not see 6 or 8 failed runs, nor did he care when I told him. Since I CAN breathe right, there is no concern or reason to look into why I DON'T all the time. Also sent me for a sleep study to rule out apnea. The slowed/shallow breathing did show up, w/ corresponding decrease in O2 level, but not into the really bad zone, as I wake up when O2 goes down. I wake up a lot. And my sleep quality is crap. But since there's no apnea, there's nothing they want to treat. or investigate. or anything. Oh yeah, we saw that. Don' know what it is. Goodbye.

Have a cardiologist too, now. Neurologist. Physiatrist. Endocrinologist. Vascular. Back doctor. Knee doctor. Hand doctor. Regular doctor. Two ophthalmologists. And probably a few others I've forgotten here. The ophthalmologists are good. The rest just keep sending me in circles, not their problem, what does Dr. Somebodyelse say? Dr. Somebodyelse says what do YOU say?

This is NOT a good area to have anything unusual, let alone complicated, in. I have had to even give these docs the internet sites to tell them what tests they should run, at times. They can't search "vertebrobasilar insufficiency testing" for themselves. And now my eyes have totally crapped out on me. What I see right now as I type this is what it looks like if your eyes are full of tears and you're looking through water. And doubled. So this is my good time of day, later it will be worse. You get used to "reading between the lines" and interpreting the blurry little things you know are letters. I typed my way through college, so I don't have to look when I write, but I just cannot read anymore.

I figure Yale is my last shot here. If they won't try to figure this whole mess out, then it's time to just accept sitting on the couch homebound, watching my life and my family go on without me. Only I can't even see it, anymore.


Quote:
Originally Posted by AnnieB3 View Post
Has anyone checked you for any aortic issues? Have you had any nuclear cardiac scans? Some people can get tears in their aorta after accidents.

It's always a guessing game to figure out why someone gets MG. I think it might be more important to figure out exactly what is going on.

Again, if you can get an evaluation by a pulmonologist, I would highly recommend that - before your appt. at Yale.

Some of what you describe sounds like it could be urgent. Don't wait to get help if you get worse.

I hope you get answer soon.

Annie
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