Posted by Dave Emond (205.188.198.156) on December 06, 2001 at 00:45:31:
In Reply to: Mastoiditis posted by Wayne Perry on December 05, 2001 at 13:00:03:
... from my HMO PCP who has tried to find anything other than CH as an excuse for my attacks. (Against the opinions of 2 neurologists.)
After my second MRI, he said I had Mastoiditis and set me up with an ENT specialist, who would then "operate and my problems would be over."
I went to this specialist, and thank God he was just that, a specialist! After looking at my MRI, he said, 9 out of 10 people off the street could come in his office and their MRI's would look just like mine. He suggested a few bowls of yogurt, and said there was no connection between Mastoiditis and Cluster Headaches. Plus, I didn't ever even have Mastoiditis in the first place.
When MRI's come back from the lab, they are accompanied by a "diagnosis" by who knows who?
The list of "suggested" problems on my 2 MRI's has been ridiculous, a host of disorders listed, even as far as Lupus! If I had the lists in front of me, you wouldn't believe the theories they came up with!
You can check out your MRI photos from the hospital, do youself a favor and do that. Then take them with you to an ENT (Ear, Nose & Throat) specialist.
I too had dizzy and fainting spells, and there was fluid in my ear (which I believe was caused by all the experimental CH meds), however, the yogurt and some over the counter Anti-Vert soon relieved the problem.
Get another opinion, it saved me from an unecessary and somewhat risky operation. My PCP even went as far as to suggest I don't see my neurologist anymore ... yeah right! I went to both specailists and they both said he didn't know what he was talking about. And this is the same PCP who had a CH patient cut his finger off to divert pain! Yet his pride in mis-diagnosing me over and over makes him refuse to accept that I have CH. As soon as paperwork allows, I'll have a new PCP. Don't trust everything they tell you, many doctors have no clue as to what CH really is and will treat you with whatever the "latest" pretty gal from the pharmacuetical company has brought in along with the pens, paperweights, letter openers and fancy posters!
Take care of yourself, ask for second opinions or better yet, referals to specialists! Check out your files, and take them with you. I'm glad I did! Best of luck Wayne, hope all you need is a few bowls of yogurt : )
Dave
(BTW: If you buy yogurt, by all means don't get the stuff put out by Trix! Not unless you can see yourself eating what appears to be melted globs of blue and red playdough! LOL! I quickly switched to the yogurt ice cream.) ; )