Help, My Husband Just Diagnosed With Wegener's Grandulomatosis - Immune Disorders Message Board

debbie363636 · 03-18-2008, 03:57 PM

Hi, My husband was just diagnosed with Wegener's and wondered if anyone can give me a perspective on this from a personal point of view. I have read up on it through different MD Websites but am interested in hearing more from a personal experience. I would really appreciate any info, this is a new one to me.....................Debbie

babysister66 · 03-22-2008, 06:46 PM

Well, I guess I'm no help but I have had a recent ct scan that found multiple hyperdense calcifications of my left kidney and "calcifications within the spleen suggestive of prior granulomatous infection". My reserch into this leads to granulomatous disease which leads to autoimmune disease. I have been researching into Lupus lately, because I have been having problems for so many years, and the docs have been no help. I am pushing the issue now and getting all records togeter so hopefully someone can put it together. I go in for a cytoscopy next week and to go over my CT results with my urologist. I will bring all this up and if I learn anything I will post it. If you could do the same it would be much appreciated. Mary

babysister66 · 03-22-2008, 06:47 PM

Well, I guess I'm no help but I have had a recent ct scan that found multiple hyperdense calcifications of my left kidney and "calcifications within the spleen suggestive of prior granulomatous infection". My reserch into this leads to granulomatous disease which leads to autoimmune disease. I have been researching into Lupus lately, because I have been having problems for so many years, and the docs have been no help. I am pushing the issue now and getting all records togeter so hopefully someone can put it together. I go in for a cytoscopy next week and to go over my CT results with my urologist. I will bring all this up and if I learn anything I will post it. If you could do the same it would be much appreciated. Mary

debbie363636 · 03-24-2008, 09:20 AM

Mary, Thanks for the reply. As you can see by the absence of posts this disease is very rare. 1500 people in the country of 300 million have it. We are heading up to the Cleveland Clinic today to see doctors up there who specialize in Wegener's. Luckily we live in central Ohio and Cleveland Clinic is one of 4 institutions in the country doing research on this disease. My husband was diaganosed by an opti-neurologist when he started haveing severe eye pain and double vision. He has colitis and thyroid which are also auto-immune disease. My 22 year old daughter was diagnosed with lupus, sjogrens, reynaulds and rheumo arthritis when she was 16. Luckily she exibits very few symptoms of any of them. As you can see it runs rampant through my husbands side of the family. Hopefuly we will get some answers up there and they can get him started on a treatment program. They treat it very aggressively with powerful cancer drugs. We were told to plan on spending up to 3 days there so I will post when we get back. I pray that you get the answers your looking for................Debbie

babysister66 · 03-24-2008, 10:44 AM

wow, I also have Reynauds and colitis. So these are all symptoms too. I definately need to bring all this up with my urologist. On the lupus sight, I was going over signs that you could have lupus, not Dr. stuff, but other stuff you might not tie into it. There was severe leg cramps as a kid, which I use to have terrible. WE were poor so I didn't go to the DR, but my mom thought I had rheumatic fever. Allergies to insect stings, which I also have. Of course theres the reynauds syndrome. If this is so rare, how was your husband first diagnosed? I seem to have been being puished around for years now, and I'm not sure how to be heard by the Dr.s. Good luck to you and thanks for the advice. Mary