GI symptoms?

[Juliesjewels]

Yes, sed rate was 28 I believe, C Reactive Protein was 2.70, there is also several other numbers including liver enzymes ast & alt that are raised. I nasal septum originally disentrigated or just kinda broken down into a huge hole in 2013 yet biopsy & ANCA was negative so ENT surgeon operated & Completelly CLOSSED THE HOLE IN JAN 2014. Now septum has broken down again & my soft tissue anywhere in sinus keeps eroding. He the ENT wants my rheumy to initiate immunosuppressant drugs immediately before my nose has chance to cave in. That's why he rebiopsied tissue & he's encouraging her to treat me more aggressively. I will keep you all posted. Thanks for listening.


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[Debbie C]

Julie there are alot of other drs. closer than the Cleveland Clinic. There are a few Mayo Clinics and John Hopkins.You should look at the Vasculitsis Foundation website to see if there is a better dr. closer to you.

[LisaT]

I'm also bring treated for Wegener's based on symptoms, no positive ANCA or biopsy. I did have other blood markers of inflammation (rheumatoid factor, anti-nuclear antibodies etc.), but they're not specific to wegeners and have been there for years before I was told I have wegeners. (Diagnosed with RA in 2010). The ENT based his diagnosis on the appearance of my nose and throat, lung nodule, subglottic stenosis. The rheumy hasn't diagnosed it per se but is treating it. Maybe the criteria are different in Canada and they don't need a biopsy result or positive ANCA to justify the meds... I'm not sure, but it seems that doctors who know the disease have a pretty good idea when they are seeing it. I met a couple the other night whose son's wegeners was basically diagnosed over the phone and confirmed on examination. (The father is a doctor so that may have helped).

[pberggren1]

Your nose and throat and lung nodule are very common to Wegs. I am surprised an ENT diagnosed you Lisa. Most ENTs have no clue what Wegs is. You prob have a good ENT. Hang on to him for a while and test him out.

[LisaT]

He is an ENT specializing in head and neck surgery. Or a surgeon specializing in nose and throat. He does dilations for stenosis. So I think he's kind of the wegeners guy. The voice clinic guy sent me to him after his injection of steroids into my vocal cords caused them to swell more and sent me into a panic because I could barely breathe. I think the voice clinic guy thought I'd need surgery. The ENT I'd seen four times over five or six years prior to that never really figured me out but suggested wegeners. Or said my symptoms could be... There's also a really good ENT at St. Paul's hospital here who specializes in sinuses. I think because of my stenosis this VGH one is the better one for me.

I have a plot forming in the back of my mind...Batman travels to Funcouver and sees Dr. Robert Rothwell, who seems to be THE Wegeners specialist here, the amazing young on-the-ball pulmonologist I saw re lung nodules, the sinus guy at St. Paul's dr. Javer, and this dr. Durham re stenosis. I don't know any kidney docs. But I'm sure there's a good one. I wonder what it takes to get a provincial health care plan to cover dr visits and/or treatment in another province? The support group members rave about dr rothwell as do his other patients in online reviews. He's figured people out and saved their lives when nobody else knew what Was going on. They seem to be doing relatively well. Just a thought.

This is is sort of off topic but Canada needs drs to work in teams like the mayo clinic. These specialists should be all in one place, communicating with each other about us and taking a unified approach. The way it works now things fall through the cracks and different drs tell me different things. It's confusing, labour-intensive, and dangerous.

[pberggren1]

You are so kind and loving and compassionate Lisa. I so much appreciate your love.

I know that I have a top lung doc. If I felt that I was not the slightest bit confident in him I would be consulting Specks right away at Mayo. Unfortunately with bronchiectasis there is not much that can be done that I am not already doing. If I feel that a consult to one of the docs you listed is in order, then I am sure Social Services would pay for the trip. They already pay almost a grand for me to go see the lung doc in Calgary. So I would think that they would fork over a bit more for a plane ticket. Dr. Rothwell is at VGH? I might have to look him up.

I know that my Nephrologist regulary consults with 2 top docs in Toronto each week. I know my previous Rheumy consulted with Hoffman and Langford on a regular basis as well. I know my previous Neph also consulted with many of his colleagues back in the UK. So I do know they all talk amongst themselves and read each others papers.

[LisaT]

It sounds as though your docs are really good and on the ball. Dr. Rothwell is in New Westminster (a suburb of Vancouver), and I believe also sees patients at Royal Columbian Hospital across the street from his office. Here are the online reviews: Dr. Robert Rothwell - 23 reviews - New Westminster, BC - Rheumatologist | RateMDs.com I am waiting for my lawyer to get back to me about his report on me; I want my former extended health insurer to finish with him as the independent medical examiner so I can go see him as a patient. They've been ignoring me and not producing the report for two months. Argh. And I realize I've totally hijacked this thread. Sorry! Maybe we continue the conversation on the batman thread if need be.

[pberggren1]

Ya, prob a good idea to go to my thread. I'm sorry you are being jerked around like this. You certainly don't need this added stress. I will look around and see if this lung doc is any good. Thanks again Lisa.

[pberggren1]

Oops...I thought Rothwell was the lung doc. Who is the lung doc?

[LisaT]

Chris Carlsten at VGH Lung Centre

What We Do


The Lung Centre specializes in the treatment of pulmonary conditions such as asthma, emphysema, chronic bronchitis, bronchiectasis, lung cancer, occupational and environmental lung diseases, sarcoidosis, pnuemonia, tuberculosis, pulmonary hypertension and interstitial lung disease.


Affiliated Hospitals
The Lung Centre is affiliated with the Vancouver Hospital & Health Sciences Centre and the University of British Columbia.

Chris Carlsten MD, MPH
Respiratory Medicine


Chris Carlsten, MD MPH is an assistant professor and Chair in Occupational and Environmental Lung Disease at the University of British Columbia. He attended undergraduate and medical school at Stanford University before training in internal, occupational, pulmonary and critical care medicine at the University of Washington. His clinical and research interests center on occupational airways disease, including the effects of diesel exhaust and other particulate matter on asthma induction and exacerbation.

Hmmm, his bio doesn't sound as though Wegs would be his thing, but he was very helpful and spent time answering all of my questions, and even called back to answer more questions and concerns about test results on the phone. He did not agree with the ENT diagnosing WG from my stenosis... What I really liked about him was that he gave me complete information even the potentially scary stuff; I find a lot of doctors try to 'protect me' by not telling me things and this infuriates me when I read later about things they haven't bothered mentioning to me. This could be a problem specific to female patients though. In any event, back to the already off-topic topic, if Dr. Carlsten were not the right guy he's connected with all the other lung guys and would consult or refer.