Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
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I hate that part! It's the worst!
My FAVORITE doc is the ENT, because he does a thorough cleaning of the sinuses every two weeks. When I leave there, I do have some discomfort for the rest of the day and into the evening, but the lasting effects of the cleaning far outweigh the discomfort. I have an extremely high pain tolerance, so to me, it's nothing anymore to have him spend 20-30 minutes in my sinuses with the suction and forceps cleaning out the crusting.
To each his/her own, I guess! (-8
MikeG-2012
"You never know how strong you are until being strong is the only choice you have"
Phil
In seeing your Ophthalmologist did he have any experience with WG? I am concerned about my eyes being blurred, subject to bright lights, floaters, and streaks of light. I went to an ophthalmologist before I knew that I have WG and he said the floaters were high protein levels. My RM wants me to go to Cincinnati Eye Inst. to have it checked out. Do you think I should ask if any of the dr's know about this disease before I make an apt.? I am sure there is as I don't think my RM doc. would recommend it. Can you give me some feed back on your experience?
Thank you and lets fight WG
John
John
A couple Ophthalmologists I have seen have a few other Wegs patients but would not be considered experts because Wegs involvement with the eye is very rare.
I would maybe see if you can get into see one at Cleveland Clinic that could be recommended by someone like Dr. Langford.
The reason I started seeing the one I see now is because my retina was bleeding. He is a retina specialist. So when my gets bad I get injections of a cancer drug called Avastin into it.
They will usually do some scans and pictures of your eye. If he is a retinal specialist then they will have a retinal scanner. But usually there are not many retinal specialists out there.
Phil Berggren, dx 2003
I have a pulmonary doc and an oncologist for my treatment. I did see an ENT and an infectious disease doc for a checkup but don't have to see them again unless something comes up!
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