Dazed and confused

[Jeannie]

Hi -my name is Jeannie-this past friday my rheumy told me I think you have wegeners-my history is migraines,frequent ilnesses including sinus and ear infections,thrush,shingles and uti's, I also have widespread joint and muscle pain-sometimes so bad I can't sleep -I am frequently exhausted not just the I did'nt get good sleep kind. My labs were an elevated crp,esr,tsh and positive p anca . My rheumy talked to me about methotrexate and did a urine dip at my last appt but did not give me any meds-she wants to do a ct scan of my lungs and sinuses and allergy testing. My sister says I should get a second opinion-I'm unsure after reading some posted stories on this forum -so many of you have had such acute episodes- do I have wegeners? -should I be on any meds? My mother had wegeners involving her joints ,skin and lungs -she isn't alive today-she passed away from a stroke and I was very young when she was diagnosed with wegeners. I appreciate you taking the time to read my story and I hope that you will be blessed with remission. For now I am taking a heap of supplements ,doing nasal rinses , following a mediterranean diet and trying to walk an hour a day (so very slowly lol) and waiting.Thanks again and have a lovely day -Jeannie

[drz]

You want to first get a definitive diagnosis if possible and if you have GPA then discuss the treatment options and recommendations from some one regarded as an expert on treating this disease, that means some one who has treated hundreds of cases. They are available at several of the centers for treating GPA listed on the Vasculitis Foundation site.

Your symptoms sound familiar so you could very well be one of us.

[Alysia]

Hi Jeannie,
It is sad to hear that your mother (also?) had WG. then, you know about that illness and how to live with it. more and more people here are telling about relatives with AI diseases.... scary.
what you describes sound similar to WG.
I believe you can find here a lot of important info and supportive and amazing "weggies family". welcome.

[Dirty Don]

Welcome Jeannie, this is a great place for info and comfort in troubling times. Your details surely do sound like WG, but drz is correct in that you need a biopsy, nasal or lung, to really determine. Don't let the docs put it off too long...mine did (lack of recognition) and I almost ended up dead...well, I was for a while! Sheesh! My point is, get after it asap. Best to you & yours.

[drz]

To echo what Don said above, don't dawdle too long as some of us on here almost died before they figure out our diagnosis. Many others have for this reason. The GPA symptoms can smolder a long time (mine were a couple of years or more) before they break into something very life threatening that can quickly kill you or at least cause a lot of unecessary damage to your body which is very life changing. Things like loss of vision and hearing can happen along with kidney and lung damage or other things that will affect you for the rest of your life so don't put it off too long to get a correct diagnosis.

[Jeannie]

Thank you for helpful advice-I am sorry for late reply but I have 2 children that were in need of homework,snack,dinner and second dinner (Lord of the Rings reference :) ) -I have a follow up appt with rheumy in 3 weeks to discuss ct scan results and allergy testing results-it took me 6 months just to get in as a new patient after bugging my gp to please give me rheumy consult as I was sure this was not all in my head or because of stress ! So I believe I am hearing that getting a nasal biopsy is needed to confirm diagnosis - Im a bit afraid of not being on any med right now- I feel like a ticking timebomb but I suppose since my symptoms are on the "B list and my anca c is negative ,my dr is being conservative ??I look forward to getting to know you all -and in response to Alysia -my mother wasnt one to discuss health matters with others-she was a tough stoic old broad :) but I do recall her having empyema of the lungs shortly after taking cytoxan- she was gravely ill and yes it was scary .

[Dirty Don]

Keep calling the rheumy for a moved up appt time...your GP needs to get off his/her conservative dawdle...WG is nothing to be conservative about, if that is what you have. The disease needs early dx to be most affective with the correct and aggressive treatments. Call again tomorrow!

[annekat]

Welcome, Jeannie! Your sinus, ear, and joint pain symptoms are those I share, and I "smoldered" along with those for a couple of years before my lungs became seriously affected and I was finally diagnosed. My dx was by nasal biopsy, which is said on here to be less likely to be conclusive than a lung biopsy, but is easier to do. In my case, it was enough. Since you don't mention having any lung involvement, I guess you would be limited to a nasal biopsy. That would be good to get ASAP, and I hope it will be conclusive so you can begin treatment. There are people on here who can't seem to get a dx, and let's hope you aren't one of those. I agree it would be best to see a doc who has treated 100's of Wegener's patients, but that is not always possible or easy, depending on where you live. My personal opinion is that it may be more important to get treatment started ASAP through someone local, and hopefully somewhat experienced with WG, who is willing to consult with a true WG specialist if necessary. You can always get with one of the VF listed WG specialists later. Or maybe you are lucky and live near one of those centers and can go to one right away. I just think it is unrealistic to think that just anyone can get an appointment and go to one at the drop of a hat, and that delaying treatment while waiting to get into one would be a mistake. And there may be local docs and hospitals that aren't known as top specialists but are perfectly capable of treating WG, though that would admittedly be a hard thing to judge up front. One should at least be aware of all the options and find out where the known specialist centers are and how one would go about connecting with one of them.

In any case, good luck, and keep us posted!