Hi Everyone,
My name is Michelle and I'm 42 years old from NJ. I haven't been officially diagnosed yet with Wegeners but all the bloodwork (Rheumatory Factor, P Anca, Sed rate, C reactive are extremely positive). I also have a saddle nose deformity.
So here is a background...I have been having sinus issues for years. Been on & off antiboitics and just not feeling good. This past fall was especially bad and was on antibiotics three times within four months. Then I started to notice that my nose was caving in the middle and other people were noticing. Especially my children
I finally made an appt with another ENT and he ordered a cat scan to check out my sinuses inside and was concerned about the saddle nose and mentioned we should get some rheumatory bloodwork to rule out Wegeners. He also looked inside and said my nasal tissue displayed like another Wegeners patient he has.
So this March I went back for my follow up and my cat scan of my actual sinuses were fine but the bloodwork was extremely elevated. From there he said the next step was to find a rhuematologist. I did but I had to wait three weeks to get in. During that three week I went down hill. I forgot to mention that when I saw the ENT for a follow up I was about a week into the Flu. First time ever getting the flu in 42 years and I got the flu shot. I think the flu must have started a wild fire in my body. I thought I was getting better and then week later I started with low grade fevers, horrible night sweats, bad leg and joint pain. I was medicating with tylenol, advil but it wasn't working well.
Finally after 15 days of fevers and sweats I did go to the emergency room to get check out because my rheumatology appt wasn't for two more weeks and I figured maybe I have something else going on. So they ruled out pneumonia. and took all the routine CBC bloodwork and all my major organs were fine. Thank god!! They did give me some presciption ibuprofen which helped much better with the leg & joint pains.
I finally made it to the rheumatologist and he ordered a whole autoimmune panel of bloodwork. I think they took a total of 18 viles of blood!! And he put me on 10mg of prednisone. I do feel so much better with the leg & joint pains and my fevers are gone along with the night sweats. My followup for the rhuematologist is on May 10 however I did receive the bloodwork and about 16 items are out of range. Some are only slightly but the ones that indicate inflammation and vasculitis are very elevated.
So Last night I got a nasal biopsy from the ENT and hopefully on May 10 they will have all the pieces and can tell me what I have. I don't think I've ever been this sick in my life. I'm very scared and don't know what to expect especially with having children. I want to remain positive and I know with proper treatment everything will work out.
So sorry this is long. Just wanted to tell my story to people who understand what I'm dealing with.
Best Regards,
Michelle
Edit: Sorry for the edit, Michelle, but I was having a hard time reading your story, so I put in some paragraphs. It makes life easier. :-)
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