Not sure

[ndngi]

Hello. I am new here and don't really know for sure that I need to be. I have had a positive c-ANCA but all of the other blood test are coming back "normal". I have had constant sinus infections and upper respiratory infections since November. The joint pain and fatigue is making it difficult to function on a day to day basis,not to mention all of the swelling and bruising on my legs and arms. Also, I have had a vestibular test done and I have abnormal results from the ENG. My family practice Dr. tells me its just RA. Just wondering about a lot of things...mainly if this is all in my head.

[Pete]

Welcome to the forum. Unfortunately, it looks like you do need to be here. Some of your symptoms can be associated with WG. You may want to look on the Vasculitis Foundation's web site to see if there is a WG specialist relatively near you. Your primary care physician may only have read about this disease. The bad news is that it's difficult to diagnose. The good news is that it's treatable and many weggies attain remission and lead nearly normal lives.

Don't be afraid to ask questions, vent your frustrations, and share what you learn.

Again, welcome and good luck!

[BookNut]

This is a great place to find answers. Very helpful people. I am also not sure if I should be there. It is looking as if I do not have Wegener's...but people have really helped me to know what questions to ask, and when to suspect that I needed another opinion. I will advise you to look at your labs and research EVERYTHING that is low or high on them. My doctors missed something very significant that I pointed out. The thing I wished I knew when this started was to get a referral to a REALLY top notch pulmonologist. I had a real bozo to begin with. Once you have found the specific doctor you want ...no matter what their specialty....don't let the office staff pawn you off on someone else. Be sure to insist that they contact that specific doctor and give them the message that you have a diagnosis of Wegener's. This might pique their interest, since really good doctors tend to be "nerds" (in the nicest sense of the word). They love to get unusual cases.

So...welcome and let us know how you are doing. Even if I finally get a different diagnosis, I plan to check in on these folks. I consider them my friends.

[mishb]

Hi ndngi and welcome.

Please don't think it is all in your head. You know your body way better than anyone else does, and if it hurts or feels strange, then so be it......you are not going crazy.

I was given a diagnosis of RA about 12 months prior to my WG diagnosis.
In blood tests, my CRP, ESR and Rhuematoid Factor all pointed to RA and the diagnosis was infact a correct one, however, the pain never subsided with medication and the sinuses became involved and were getting worse. My GP never did an ANA or ANCA test at the time. When these bloods tests were done, then it was off to the specialists to treat for WG and then later on MCTD (which includes Lupus and, again, RA).

What I'm really trying to say here, is that it is possible that you have RA but I hope your doctor has also done all of the correct bloods tests, such as the RF and also ANA and ANCA. They ANA and ANCA are the ones that can show other Autoimmune and vasculitis conditions.

Good luck to you and I hope you get some definative answers soon.

[Dirty Don]

Welcom ndngi, best place you could come to to learn more about your condition. I agree with Pete that this sounds like a WG flare, but it's best to get it all checked out with the appropriate tests. ANCA is not enough if the docs truly suspect WG...they need a localized tissue biopsy to be sure. Best of luck to you.

[ndngi]

Thank you all for the words of encouragement. I really appreciate them. I have another question. Does anyone else have "good days"? Aside from the constant leg, chest and sinus pain, there are days like today that I think things aren't really that bad. But I know tomorrow it could be back to a bad day and not being able to get out of bed. Does anyone else feel this way? Is this part of WG?

[Dirty Don]

It's a part of WG no matter the degree of involvement...we can all speak to those days...just wishing they were more frequent. It was over a year before I started having 'normal' days again...and, now, I have them more often than not. Hang tough...you'll get there!

[Jaha]

Welcome to the forum, I'm glad that you are asking questions about your concerns. Almost all of us are different,even if we have wegs in the same body parts. If I have a good day and I always take advantage of it then I might have 2 down days or more. It is all so unpredictable!

[annekat]

Welcome, ndngi! The others have said the important stuff, but if you indeed have Wegs, I'm glad you are here, because there is really no place better to learn about it and get the friendship and support we need from people who've experienced what we have. And yes, there are always good and bad days! As for doctors, the standard seems to have a rheumatologist with a significant amount of experience with Vasculitis/Wegs, as opposed to one whose main experience is with treating arthritis. Some of us have pulmonologists and other non-rheumy specialists as our WG treating doc, but that may not be ideal. Where you live may determine who you can get who is qualified to treat you. Check with the VF website as Pete said, or maybe get with a university med school teaching hospital for advice on who might be in your area. A non-specialist can often consult with a specialist for free.

I look forward to hearing more from you and how things are going! Even if you don't have Wegs, let us know!