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[QUOTE=NOTSONUTSO][SIZE=1]No I have not had a biopsy yet of the painful "bump" on bridge of nose. :confused: I have been referred to ENT and neurologist but have not gone. I know ALL about Wegener's since I first heard I had "symptoms" of the condition. I got a lot of information from WG Association, Int'l. WG can progress slowly or can be swift and deadly (just like lupus). The vasculitis I have has slowly but surely progressed over the years (since 1998). I'm told I have symptoms of both lupus and WG but blood work is not specific for either condition. :nono: I have sinus, ear and throat pain and respiratory problems. Also have "crusting" in nose passages. I really am not bothered by the fact that I don't have a 100 percent diagnosis of either condition. I have a cousin in town who is a gyn oncologist, :p and although it is not his expertise he agrees that autoimmune diseases (symptoms) can "cross over" and be hard to pinpoint a particular one. :dizzy:
By the way, what part of Calif. do you live? I grew up in Ohio and Calif. (Canoga Park, Torrance, and Lomita) and have 2 brothers still living there. :wave: [COLOR=DarkSlateGray]undefined[/COLOR]wl [/SIZE][/QUOTE]

Hi!

I am glad that you are fully aware of WG, and that you received helpful information from the Association. It must be comforting to have an expert physician in the family! Even tho his expertise is OBGYN, oncologists are very sharp! He must see a lot in his practice! You certainly have been dealing with this for a long time. Has the vasculitis actually been determined? I see where some patients are referred to hematologists and, for lung problems, like sarcoid and/or WG, referred also to a pulmonologist. I went looking on the net with regards to your symptoms. One that my doc screened me for was Sarcoid. Have you ever heard of it? It is another granulomatous condition, like WG, only I'm unsure if it causes saddle nose deformity. If affects the lungs: Shortness of breath, chronic cough, skin rash, weight loss, fever, fatigue and more. Chest Xray is done to see if shadows (fluid), like lupus can indicate on Chest Xrays. Sarcoid affects each one differently. It can even clear itself up. Those who receive treatment respond well to prednisone.

Another condition that causes saddle nose deformity is [B]relapsing polychondritis[/B]. Have you heard of that? Symptoms are as follows:

sudden pain in the inflamed tissue at the onset of the disease.
Common ones are as follows:
pain
redness
swelling and tenderness in one or both ears, the nose, throat, joints and/or eyes
Fever
fatigue
weight loss often develop
"[B]Inflammation of the ears and nose can cause deformity (saddle nose deformity [/B] and floppy ears) from weakened cartilage. Impaired hearing, balance, and nausea can be caused by inner ear inflammation. Inflammation of the windpipe, or trachea, can lead to [B]throat pain,[/B] hoarseness, and breathing difficulty. This is a potentially dangerous area of inflammation in patients with relapsing polychondritis which can require assisted breathing methods when severe. Joint inflammation (arthritis) can cause pain, swelling, and stiffness of the joints, including of the hands, knees, ankles, wrists, and feet. Eye inflammation can be mild or severe and can damage vision. Cataracts can be caused by the inflammation or from the cortisone used to treat relapsing polychondritis (see below). Other tissues that can develop inflammation include the aorta (which can lead to aneurysm or aortic valve weakness), tissues in or around the heart (myocarditis and pericarditis), the skin (vasculitis), and the nerves from the brain (cranial nerve palsies). "

Diagnosing: Relapsing polychondritis is diagnosed when the doctor recognizes the classic pattern of cartilage involvement. The symptoms described above can suggest the disease. There is no one specific test for diagnosing it. Blood tests that indicate inflammation, such as an elevated erythrocyte sedimentation rate (ESR), C-reactive protein, and others, are characteristically abnormal. Cartilage biospy.

Well, anyway, that is another autoimmune condition that can be overlooked and I thought I'd put that out there for you to review--if you haven't already.

Yes, isn't that the pits that autoimmune are so difficult to dx and there can be more than one with symptoms overlapping! We've screened for many that can affect the eye. Still in limboland! Are you getting any type of treatment?

Currently, I'm dealing with edema that seems to be progressing daily with an increasing blood pressure. I'm going to try eliminating the anti-inflammatory medication first to see if I get some relief. I'm hoping that does the trick and it isn't a new symptom. I would really like to know the cause so it can get treated. My vision is affected and I'm feeling pretty uncomfortable right now! Today was kinda rough. But I'm learning lessons through this. It forces one to enjoy the good moments regardless. :D

I'm not near the areas you mentioned but further North. I've seen Ohio before and I thought it was lovely with rolling green hills and beautiful farm houses! There are lots of charming towns with gorgeous old-fashioned homes like Carollton! Are you in Ohio now?

I hope you're having a good day! :)

Hugs to you! Cal Sun :cool:





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