New to site. Will see rhematologist in July.

[Jaha]

3lazycats,
Welcome to the group, I know I'm a bit late chiming in, sorry. I think that not being able to breathe with chest pains is not just a little dangerous, but you should really consider going in to the ER. I feel that if you do have Wegener's, you aren't getting any better with the hurry up and wait treatments, please listen to your body a go to the ER, even if they just give you a breathing treatment and check your heart, at least maybe you will feel better for now. Wishing you all the best and go get the chest pains checked out.

[3lazycats]

Being that I have had all of these same symptoms since February it isn't a new or emergency situation.

I am highly discouraged though.

[drz]

Being that I have had all of these same symptoms since February it isn't a new or emergency situation.

I am highly discouraged though.

Weg symptoms can smolder for months or even years and then break out like a forest fire and quickly become critical and life threatening, especially if they are not being held back or partially contained by some appropriate meds. Do you have an expert consultant or knowledgeable person directing your treatment?

[3lazycats]

Well thank you everyone for waiting it out with me. My results were all normal. No wegeners, no lupus, no rheumatoid arthritis (those are the three they tested for).

Its good news but at the same time now what do I do?

[drz]

Well thank you everyone for waiting it out with me. My results were all normal. No wegeners, no lupus, no rheumatoid arthritis (those are the three they tested for).

Its good news but at the same time now what do I do?

Ask them to give you a diagnosis that will explain the symptoms you are having and a suggested treatment plan that will help you.

I have learned to tell doctors I need to know what it is, now that you have determined some things it isn't.

[annekat]

lazycats, I'm glad you finally got your test results. If you truly don't have any of those 3 diseases, I'm glad. But I think someone should be pursuing this further, with the symptoms you've been having. There should be docs who specialize in getting to the bottom of hard to solve cases. In my own case, my pulmonologist did not think I had WG because my ANCA was so low. There had been no biopsy done, but the overseeing internist at the hospital, where I was just overnight for testing, had suggested it based on the results of a CT scan the pulmy had ordered. A previous chest xray hadn't shown much, if anything. I know I've already mentioned this. I can't believe that after the CT scan, the pulmy was still resistant to my having WG. The internist was the smart one, but it wasn't his job to dx, so he sent me home with antibiotics and prednisone and instructions to see my other docs. Since the pulmy was out of town, I took it upon myself to get a nasal biopsy from my ENT, which proved positive for WG. (My saddle nose had just appeared, too, which sort of clinched it in advance). I did not have a rheumy involved in any of this, because its so hard to find one here who knows WG, but the process with the tuned-in docs I had (hospital internist and ENT) was fast and easy. The pulmy had to admit he was wrong and started me on treatment right away, since he was the only one willing to do it; it was the right treatment, and he's continued to treat me, successfully, for the most part.

I guess what I'm getting at is that Mayo interpreted the tests they were sent, but that is all they were in the position of doing. A negative ANCA is not conclusive. Did you ever have a CT scan of the lungs or any kind of biopsy? I would not wish a lung biopsy on you and would hope they could get it some other way. You cannot go on suffering with these symptoms..... have allergies been explored? Sorry if these questions could be answered by looking back at your first posts, which I did briefly. You need someone on your case to find out what is going on, and I'm thinking maybe a really good internist who is willing to take the time and expedite the process in any way possible. You could still have WG, and there are experts available for consultation, as I'm sure was mentioned above.

I don't know if you said where you are located, but maybe someone on here lives near you and could recommend a really good doc, whether a rheumy or otherwise, who would know that test results are not always conclusive and all possible physical tests, in addition to bloodwork, need to be explored. Best of luck to you.