First mention of Wegener's yesterday: uncertain in Ohio

[kdjaxn]

Thanks for the quick replies everyone, and for the advice. I'll keep poking them about it. I live in a suburb of Cleveland and did go to the Cleveland Clinic for these appointments. Maybe they see so many WG patients that she was concerned she might be just diagnosing willy-nilly left and right. I don't know (can you tell it's close to midnight here? I'm feeling goofy and very tired as usual). I just know something is wrong- it's stressful when you prepare your presentation for your doctor's visit to convince them you are not well. I had some testing done on Halloween and everything was normal except low co2- looking that up pointed to kidney issues but creatinine was normal, so doc said it didn't mean much, something about fasting before your blood test does that. I'm not anemic, Vitamin D is good, white blood cells/red blood cells are normal, absolute neutrophil count is fine (ANC)- I have no idea if this is in any way connected to ANCA but.... normal bloodwork might be making them skeptical. I'll keep you posted on where I get with my prodding. Thanks!!

[whatthewhat]

To be honest, the back pain has me nervous for you. I would even say, since it can take so long to see a specialist, to consider either exaggerating the pain level a bit or waiting for a bloody nose and then going to urgent care etc and then telling them all the symptoms. Might get you seen faster by a regular rheumy, with a referral from UC or ER. Our daughter had a flare that had all her numbers in normal range, with the exception of PR3 and ANCA, except that if you track all those normal numbers were slowly moving in the wrong directions. This is a terrible disease that is highly individualized and can move awfully fast.

[kdjaxn]

Thanks. At the very least I'm going to ask the ent's receptionist to give her the request message fora blood test so Tuesday she will get it or sooner. The first attempt just for a message got me a promised nurse triage call back that I never received. I'll just tell her to quote me in a message and don't worry about the medical jargon. When I told a doc about the back pain in July he gave me a back exercise worksheet. Didn't feel anything when he pressed on my back. I don't have the greatest posture but I've never had back pain for this long either. Just talking about it helps the anxiety though so thanks.

[BookNut]

kdjaxon

I am not the least surprised by the lack of a call back. Keep after them. Somebody needs to clean up procedures at that place.

As for back pain.... Once you get an answer and know it is safe to do so...try acupuncture. I have had back pain since a fall when I was 18. It has gotten a little worse every year. My PCP sent me for my sinus issues. So far, no luck with that...but I also mentioned the back pain and she worked on that too. After three days I was startled to realize that my back pain was gone. Truly amazing.

[annekat]

Welcome to the forum, and I'm glad you found us, especially if you end up having WG. Please ignore what you read about a WG patient being "a goner" if not treated within 5 months. This could be true in some severe cases, but then the person would probably be in the hospital and would get dx'ed. In many cases, people have been sick for two years or more before getting a dx, since WG so closely mimics recurrent sinus infections, allergies, asthma, etc. in many people. It sounds like you may be one of those, and if it just started in October, and you do have WG, you are catching it earlier than many. I don't know why the ENT you saw did not pursue some testing and did not do a nasal biopsy on the spot. I understand that your previous blood test looked good, but things can change quickly. Also, ANCA is not always a reliable indicator for a WG dx. As for the back pain, it's been my understanding that the kidneys are higher up, just under the ribs, rather than in the lower back, if the kidneys are your concern. In any case, it does sound like it could be WG, so as they say above, keep after them, and know that if you have WG you are in the best place for treatment; I'd try to see Dr. Villa Forte if I were you! Good luck and keep us posted.

[me2]

If you continue to have beauracratic problems don't hesitate to call the medical director and say "I was told I have possible Wegener's and now I can't get an appointment for a month and I am not getting calls back that were promised to me. Can you tell a patient they have possible Wegener's and then refuse to do a timely follow up?"

From Wikipedia (and my experience) - a medical director is a physician who provides guidance, leadership, oversight and quality assurance

[Psyborg]

You should contact Rheumatology. They are the main treaters of Wegeners. Yes you will be dealing with other doctors, but the Rheumatology department at CC is very good.

[BookNut]

Thanks for the quick replies everyone, and for the advice. I'll keep poking them about it. I live in a suburb of Cleveland and did go to the Cleveland Clinic for these appointments. Maybe they see so many WG patients that she was concerned she might be just diagnosing willy-nilly left and right. I don't know (can you tell it's close to midnight here? I'm feeling goofy and very tired as usual). I just know something is wrong- it's stressful when you prepare your presentation for your doctor's visit to convince them you are not well. I had some testing done on Halloween and everything was normal except low co2- looking that up pointed to kidney issues but creatinine was normal, so doc said it didn't mean much, something about fasting before your blood test does that. I'm not anemic, Vitamin D is good, white blood cells/red blood cells are normal, absolute neutrophil count is fine (ANC)- I have no idea if this is in any way connected to ANCA but.... normal bloodwork might be making them skeptical. I'll keep you posted on where I get with my prodding. Thanks!!

I do NOT have WG....but I DO have experience with Cleveland Clinic. The vast majority of people on the forum who have been there have had good experiences. HOWEVER...the biggest issue I had with them is the lack of follow through. I spent three months trying to get some tests done. It was a beuraucratic nightmare. The biggest issue was the support staff. They would promise to do something and NEVER. follow through. I always had to call them the day after they promised to get back to me....only to get another promise of action that was not to be fulfilled. Hopefuly your doctor's staff is not like that. BUT...if they have not called you at the promised time....keep calling them back and don't let them put you off. In hind-sight, I SHOULD have contacted the doctor directly via the email system and also let him/her know of the lack of follow through by any of the staff members if that happens to you, But even as I type that I realize that might not do any good. The last email I sent was answered by the secretary....who was one of the legion of incompetent staff. ANYWAY...keep after them!

[mishb]

Hi Kd and welcome to the forum.

I'm glad that you found it so fast but I'm sorry that a doctor has given you the need to find it

Being from Australia, I can't give you any information on the doctors over there, but this is why we have this wonderful forum with amazing people to point you in the right direction.

I hope you can see someone very soon and get a proper diagnosis - however, I hope it is not WG

Best of luck to you