GI symptoms?

[jlove]

Hi everyone,

Has anyone dealt with any GI symptoms related to Wegener's? I noticed some blood in my stool today and I'm wondering if this is something anyone else has dealt with? I'm sure it's not a positive thing but I'm wondering if I should be alarmed by this.

Thanks!

[Debbie C]

I would mention it to your dr. simply because that seems to be one of the questions they always ask also if is is black and tarry , Better safe than sorry

[Alysia]

Hi
I have colon involvment of wg. my symptoms are aggresive diahrea, very painful spasms and stomchaches, loss of weight (even with pred). I dont think that I had blood. but I was not coughing blood as well eventough I have lung involvment. wg has different manifastations.
you need to check if it is IBD and you can easily check it using this test: Calprotectin - Intestinal Inflammation Index Test (http://www.calprotectintest.com/)
I got strong positive in it. good luck and update us.

[ingemlb]

Hi Jess. I was diagnosed with Crohn's or IBD in 2010 when during a routine colonoscopy they found an inflamed ileum. I have had many years of bowel and colon issues. Lots of pain attacks and bowel blockages due to adhesions, IBS and lately IBD. Then they found some bleeding stomach ulcers. In 2012 I was told I had chronic gastric ulcers which were not caused by the Helicobacter bacteria as they couldn't find that in the biopsy.

Then early this year when I was hospitalised due to Vasculitis (severe joint pains) they did another gastroscopy and still found the ulcers there but my gastroenterologist believes it's all due to Wegener's and that the IBD diagnosis was probably incorrect. I was too sick at the time to do another colonoscopy but once things have settled down later in the year they will check it all again to see if the treatment is having an effect.

I do have bleeding from time to time. from June last year had severe recurring diarrhea attacks one which landed me in hospital for a week in November on a drip. Tests never found any bacteria or virus responsible my bowel specialist felt at the time that I must have had some kind of infection in June (travelling back from overseas) but never gave the bowels a chance to recover as I had too many trips away (Mum was sick and dying in NZ). Anyway ... by January all my joints were inflamed. During the same year (2013) I had recurring sinus issues ending with sinus surgery in October which also never really healed.

So now I feel it was all due to Wegener's. In my case my kidney, lung, liver and heart seem to be ok and all my problems are in the Sinus, eyes, mouth, and digestive tract from top to bottom. When the stomach ulcers bleed it's more like black tarry stools. When things bleed in the colon it's bright red but then I also get periodically inflamed haemorrhoids and they can also bleed bright red so it's not always easy to figure out what is what. I get a lot of spasms along the digestive tract. Sometimes in the oesophagus, sometimes stomach, sometimes bowels.

But yes... get it checked out. Knowing how aggressive Wegener's can be you don't want any permanent damage to your bowels or colon.

[Alysia]

my gastro doc says that in a colonscopy, Crohn and WG looks much the same....

[ingemlb]

my gastro doc says that in a colonscopy, Crohn and WG looks much the same....
Makes sense as it's all inflammation!

[Alysia]

Makes sense as it's all inflammation!
he said that there are granulomas in the colon both in wg and in Crohn, which look the same.

[ingemlb]

Ah ok. In my case they just found an inflamed Ileum.

[Alysia]

not in every wg there are granulomas. even in the lungs. this is my case too, no granulomas. thanks God.

[ingemlb]

Alysia that's interesting. They haven't found any for me yet. Inflammation (non-specific) in just about every part of me but no granulomas have so far shown up. So I guess that's something to be thankful for.

[Juliesjewels]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.


Sent from my iPad using Tapatalk

[renidrag]

Anca should not be used as a marker for WG. Do you have sinus problems? I only have lung involvement and was diagnosed after two Bronchoscopies. Never had a nasal biopsy. I think the most telling symptoms are in blood testing, especially the SED rate, CRP and Creatinine. Have you had any blood tests run other than ANCA?
Dale

[Alysia]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.

Hi. there can be WG even with negative anca. AND - I had 2 false negative nose biopsies. but I do have WG. my doc did case conference about me, and after consulting with couple of experts, looking at the clinical pic, they concluded that I have wg.
since then I developed saddle nose, which makes me a weggie, with no doubts :rolleyes1:

[LisaT]

The ENT who believes I have Wegener's said he can diagnose it based on symptoms... I'm ANCA-negative and haven't had any biopsies. He's basing it on subglottic stenosis and obvious inflammation in my nose and throat, and pain and fatigue, I think. (My other docs don't necessarily agree though). It sounds as though you need a second opinion. From what I understand, the SED rate and CRP are pretty non-specific inflammatory markers.. They tell you when you have autoimmune inflammation, but don't narrow it down to which disease. I've had these elevated with polymiositis, then RA. Now they're not elevated although I feel like Wegener's (or similar symptoms if it's not wegener's) is not under control. It seems that this disease is unique in every person, and also overlaps or coexists with other autoimmune inflammatory diseases, so the diagnosis takes someone who looks at all of the signs and symptoms and blood tests and whatever other info they can get, and assesses the person and makes the call based on the whole bigger picture. For sure no one factor should cause them to rule it out, if all other aspects point to the disease. That's too dangerous.

[ingemlb]

Re my diagnosis. Bit complicated as some results were not as expected.

1. I started last early 2013 with intermittent and migrating joint pains that may stay in the one spot for several months. I had had sinus issues for a long time but early 2013 they became nasty in that I was getting constant mucous and daily headaches. The mucous started to get crusty later in the year. I had a very busy year with planned travel and also extra trips to New Zealand as my mother became increasingly more ill. So it wasn't until later in the year that I saw an ENT specialist who did cat scans and told me that my sinus' were severely diseased and would require surgery. I had to fit in another trip to NZ and then had the operation in October. He removed polyps, removed the diseased tissue and widened passages. However apart from the headaches stopping immediately, I never really felt the operation helped all that much as the discharges continued and it took absolutely ages for the bleeding to stop. Unfortunately we didn't suspect anything like Wegener's so he didn't do extensive biopsies of the removed tissues. Sadly on retrospect.

2. Then late December the joint pains became nasty and within a few weeks spread throughout the entire body. In the end I was so crippled by pain that I ended up (at my sisters advice) heading to ER and they immediately admitted me and did umpteen tests.

3. Cat scans, Xray's, MRI's, ultrasound, blood tests were done and within a few days it was apparent that I was suffering from Vasculitis. Next came the trick to find out which type and that took a bit longer. Each biopsy that was done (including the nasal passage but I must say he biopsied only the start of the sinus passages) showed "non-specific inflammation". The Sinus Biopsy was done after I had already been on pred for a week so not sure if that had any impact. Lung biopsy (via bronchoscopy) and stomach biopsy (via gastroscopy) also showed "Non-specific inflammation". No helicobacter in the stomach to explain the gastric ulcers. I had also previously been diagnosed with IBD due to an inflamed ileum but at the time I was in hospital early this year I was deemed too ill to perform another colonoscopy to confirm it.

4. The other symptoms I had on presentation and suffered with for quite some time were badly inflamed eyes. Mine were the colour of tomatoes when I was in hospital. I suffered for several years from recurring corneal ulcers for which we had never really found a cause. It was thought it could be linked to the IBD or perhaps be Sjrogens but never proven.

5. I also had a massive tongue ulcer which took over 6 weeks to heal.

6. Then of course the inflammation in all the joints.

so my Rheumatologist initially thought it may have been Churg-Strauss but then and I am not sure if it was the high Anca or all the blood tests made him lean towards Wegener's. Strangely enough when I saw the ENT specialist for the biopsy he mentioned that once a year he has a patient who doesn't improve after the sinus surgery and this usually is due to Wegener's. At that stage the Wegener's hadn't been confirmed.

So my Rheumatologist decided to call in another expert Rheumatologist. What confused him was that with Wegener's he expected by now some major damage to vital organs and the scans and tests so far confirmed that heart, lungs, kidneys and liver were all ok. Hence the decision for a 2nd opinion. The 2nd opinion was by a Professor who was more heavily involved with Wegener's at one of our major Public hospitals. He was not given any information as to what was suspected. Only my test results so that he would form an independent assessment. He took 5 minutes to tell me I was suffering from Wegener's but felt that as the vital organs were ok it was hopefully "limited Wegener's" and would respond well to Methotrexate. I told him that was what the other Rheumatologist was also thinking and he said well I totally agree with his diagnosis and recommended treatment approach. I now still see this Professor as my Rheumatologist.

So to me it was a rather stressful, frightening and baffling period. I spent over 5 weeks in hospital and thank goodness found this forum very quickly so I could get some advice and comfort from others who had been in this boat a lot longer. Otherwise I think I would have had a massive breakdown.

Not sure if this answers your question Juliesjewel. But that's the best I can do. I didn't really ask them exactly what made them so sure it was Wegener's but I don't have any doubt since arriving here in the forum that this is what is plaguing me :( Unfortunately. Still not sure if the Methotrexate will do the job. So far I am down to 30 mg daily of Pred too early to tell if the 20mg once a week of MTX will do the job. Seeing my Rheumy on Monday so hopefully he can reduce the pred again depending on blood test results.

Oh the Gastroenterologist at the hospital was convinced that bowels, stomach, mouth ulcer, eye inflammation, sinus inflammation, joint inflammation, lung inflammation and any other non-specific inflammation they found were all due to Wegener's. So she didn't agree with the IBD diagnosis. If that is true then I have had Wegener's at least since 2009 and it seems strange that it only all became very nasty last year given how nasty and progressive this disease is without treatment.

[mishb]

I think you can have it for a long time and it basically takes care of itself without any medical intervention required, then when something big happens - say a virus or infection, stress or accident - it rears it's ugly head, says I'm here and I'm here to stay. I think most people will find that a virus or stress were the main triggers for WG to come out.
Also most people (of course not all), will agree that they have had recurring symptoms for many years or sometimes since childhood, before a full on attack which lead to a diagnosis.
I have no doubt that you have had this for quite a few years, on and off, and the stress of your mother being ill, flying back and forth to New Zealand, and then her subsequent passing, is what finally triggered your WG into a onslaught of symptoms.

[ingemlb]

Yes well there has been no end of stress over the last few years all coming to a head last year. As well as Mum being ill our son had a very bad psychotic episode and we had to make the hard decision to move him out of our home into supportive care as we were finding it more and more difficult to cope with the stress. So that on top of all the trips back and forth. I find that long flights (even 3 hours) seem to trigger a lot of infections and on each trip I became quite ill. so that too didn't help. Then there was the surgery, also stressful. So maybe finally it all got too much :(
Trouble is we are still totally stressed out about our son moving out. Some days I feel like having him live here with us was actually less stressful but we need to go on with this so that he learns to become independent of us. We are not getting younger or fitter and eventually he will be on his own so best we help him now. He is 41 and it's high time he learns some independent living skills. we thought he could have learnt them here as the DHS provided him with a bungalow but it was all too easy and he became a recluse and depended on us for food etc. Now that he is not living here with us our relationship has actually improved and he is more apt to listen to advice.

Anyway ... stress is rather difficult to avoid. We all have our issues in life :(

[drz]

How fast Wegs progresses or how far it progresses without proper treatment is highly variable just like the disease itself. It seems the vasculitis can strike any part of the body but it does seem to prefer the sinuses and nasal area, joints, eyes, hearing mechanisms, lungs, and kidneys but it does not limit itself to those areas.

For me the progression from nasal crusting and bleeding to roving joint pain, serious foot pain that mimicked plantar fasciitis, eye inflammation, weight loss, inflamed eye lasted about two or three years despite seeing a dozen doctors for these various symptoms with no one having a clue what was actually going on. Only when the Wegs progressed to lung damage, kidney damage, loss of hearing and balance and extreme fatigue and trouble breathing which led to hospital admission to treat me for a suspected pneumonia, did they even start to try figure it out. By this time I was knocking pretty hard on death's door. My salvation came about only because one doctor thought to send my blood and urine samples to Mayo Clinic and they suggested a 99% probability of Wegs which quickly resulted in a transfer to a University Teaching Hospital where they knew how to treat Wegs. If I had know about the Find a Zebra web site I might have suspected this diagnosis much earlier and saved myself a lot medical treatment and Weg damage. I had hand surgery at Mayo Clinic when my joint pain was just beginning to occur and had thought about asking them for an evaluation of my strange joint pains but didn't follow through with it.

It seems reasonable that stress levels, infections, other illnesses may, or even should affect the severity and progression of Wegs and the occurrence of Weg flares. I believe the longitudinal study of hundreds of Weg (now GPA) patients currently underway is looking at some of these variables and we might know more in a few years.

[LisaT]

How fast Wegs progresses or how far it progresses without proper treatment is highly variable just like the disease itself. It seems the vasculitis can strike any part of the body but it does seem to prefer the sinuses and nasal area, joints, eyes, hearing mechanisms, lungs, and kidneys but it does not limit itself to those areas.

For me the progression from nasal crusting and bleeding to roving joint pain, serious foot pain that mimicked plantar fasciitis, eye inflammation, weight loss, inflamed eye lasted about two or three years despite seeing a dozen doctors for these various symptoms with no one having a clue what was actually going on. Only when the Wegs progressed to lung damage, kidney damage, loss of hearing and balance and extreme fatigue and trouble breathing which led to hospital admission to treat me for a suspected pneumonia, did they even start to try figure it out. By this time I was knocking pretty hard on death's door. My salvation came about only because one doctor thought to send my blood and urine samples to Mayo Clinic and they suggested a 99% probability of Wegs which quickly resulted in a transfer to a University Teaching Hospital where they knew how to treat Wegs. If I had know about the Find a Zebra web site I might have suspected this diagnosis much earlier and saved myself a lot medical treatment and Weg damage. I had hand surgery at Mayo Clinic when my joint pain was just beginning to occur and had thought about asking them for an evaluation of my strange joint pains but didn't follow through with it.

It seems reasonable that stress levels, infections, other illnesses may, or even should affect the severity and progression of Wegs and the occurrence of Weg flares. I believe the longitudinal study of hundreds of Weg (now GPA) patients currently underway is looking at some of these variables and we might know more in a few years.

Thank G-d they figured it out when they did. I wish it had been sooner. I also had symptoms, albeit different ones, for many years before Wegeners became a serious suggestion, although it had been queried/mentioned a number of times and purportedly 'ruled out' (which I now believe meant, more accurately, "it may be smouldering but is not rearing its ugly head enough for us to diagnose and treat it.") I had been to ENT four times over about six years before finding the one (or perhaps before the symptoms showing clearly enough) for a diagnosis; which still has not been confirmed by my rheumatologist or other docs.

[ingemlb]

Thank you DRZ and Lisa. This clarifies it a lot more for me. When they first thought I had Churg Strauss I read that it came in "stages" and the time period of the stages they suggested seemed to fit with my pattern of illness. Maybe all Vasculitis comes in stages but not so clearly defined. I had symptoms with Sinus issues going back to the late 1990's then 2001 post nasal drip and 2002 the nasty cough that lasted for years with a lot of phlegm in the bronchials, recurring acute infections then was told I had fibrotic tissues in the lungs, fatty liver etc. 2005 the sudden neuropathy. Bowels had been playing up for years. However from 2007 I started a trial protocol which settled things down for a while then 2009 it all started to go haywire with eye inflammation and knee inflammation which was very painful then the bowels became nastier. Then 2010 the stomach ulcers were diagnosed and downhill from then on :( but the worst started early 2013. So it seems like a very long stage before diagnosis now on retrospect and probably the trial treatment I was on did slow thing down for a while and possibly protected my organs.

Guess more will be learnt as more people are diagnosed and we gain more experience with the disease and treatment.

[Juliesjewels]

Thank you ingemlb & others. This thread has explained & made me realize others suffer with various unexplained symptoms for a very long time before diagnosis. All of my problems were GI related & started in 2011. Stomach ulcers, terrible abdominal pain, reflux, & gastroparesis caused by inflammation. But no one knew why all these problems started. Drs only treated my symptoms. About a year ago my sinus problems & pain & fatigue started and/or worsened to the point that my nasal septum basically necrosed. It was gone. Just a hole where the septum should've been & I still had crusting & breathing problems. That ENT suspected WG & biopsied nose but biopsy showed non-specific inflammation & I was ANCA negative so ENT operated to rebuild septum. A four hour surgery was successful but now 4 months post surgery the tissue has died again & I've got another hole. The joint pain is horrible. My rheumatologist will let me stay on 20-25 mg prednisone a day but won't prescribe anything else to treat vasculitis until I can get a positive wegeners biopsy. I don't know what to do. We live in tx & my husband wants to take me to mayo or Cleveland clinic or somewhere that will diagnose the WG & start to slow down this disease. Any advice for me from anyone? Thank you for listening.



Sent from my iPad using Tapatalk

[ingemlb]

Juliesjewel I would head to the Cleveland clinic ASAP and get that diagnosed. I was put onto 40 mg of Pred to get this under control before starting on the Methotrexate. It sounds like there is enough evidence of WG and you have the same issue as me "non-specific Inflammation" only I was "lucky???" to have a high Anca score. I saw a very good youtube made by the Cleveland Clinic which makes me feel they have a LOT of Wegener's experience. here is the link:

https://www.youtube.com/watch?v=KS025XnKxbU

Suggest you watch this. It takes about 15 minutes.

I believe the Mayo Clinic is also good. I am in Australia so I don't have personal experience with either clinic but speaking just from what i have heard.

Hope you get some relief soon.

[LisaT]

I agree with Ingemlb. Refusing to treat your disease without positive biopsy or ANCA sounds negligent to me. If travel is a hardship maybe a second opinion where you are? The disease presents differently in everyone and chooses its own pace, but you've already suffered too much damage. It needs to be stopped in its tracks, on YOUR timeline (ASAP), not that Dr's. I wonder whether he or she is thinking they need the biopsy result to justify the expense of the meds? Sometimes it seems to boil down to economics as if a price can be put on your life or your quality of life. Don't be afraid to fight for better treatment. You deserve it and need it. Good hubby for wanting to take you wherever it's available. :thumbsup:

[MikeG-2012]

I agree with Ingemlb. Refusing to treat your disease without positive biopsy or ANCA sounds negligent to me.

But unfortunately, that seems to be the NORMAL ROUTINE with this disease. I believe it is up to us, the ones who have it, to educate as many people we can to help others get a diagnosis and treatment! Hopefully SOONER than before the damage is done by the disease!

[annekat]

I'd still like to know what a granuloma looks like!

[drz]

I think an expert in Wegs can diagnose and start treatment of Wegs without a positive biopsy. Others with less experience and knowledge of Wegs may not be comfortable doing so.

[jvilner]

Agree with drz. My rheumi held off 2 months waiting for a biopsy that was inconclusive. But afterwards didn't wait and gave me the meds to slow progression.

[marylz]

I am proof that doctors will start treatment without a biopsy. In my case the biopsy would have done more harm than good had they done it. As it was the doctors ruled out everything else and felt confident in diagnosing me. On to CTX and then RTX... seem to be getting better. I have the greatest confidence in my team of doctors!

[Juliesjewels]

As an update on me because you all are so caring & took the time to write. I asked my ENT for a second biopsy going to a well re known lab in Houston. Those results are a week away. Next rheumy is keeping me 25-30 mg prednisone until biopsy results then a treatment. I will post results on a week. Thank you all for caring.


Sent from my iPhone using Tapatalk

[Debbie C]

That was the dr. I see on that you-tube clip, I wonder why he didn't ask me to be in his video. I'll have to ask him when I go up in Sept. !!! But as far as the anca test goes mine kept coming back neg. for the longest time even after I had a lung biopsy that proved I had it. That's why he doesn't include that in my monthly bloodwork.
Julie are you getting bloodwork done ? the sed rate should show some inflamation.
Anne, a granuloma is a nodule like a mass that will show up. I keep having them come and go but my kidney dr. said anyone can have nodules and it can be nothing that's why they need biopsied.
Good luck with the results Jewels,let us know.

[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.


Sent from my iPad using Tapatalk

[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 (http://www.ratemds.com/doctor-ratings/52160/Dr-Robert-Rothwell-New+Westminster-BC.html) 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.

[pberggren1]

It doesn't say he is interventionary. So far I am pleased with my lung doc. I know that if he thought I needed to see someone else he would have suggested it. I can always ask Specks too if I feel it is necessary.

[Alysia]

Lisa, you are such a good soul. we are blessed to have you with us :wub::hug1:

[ingemlb]

My ENT was the first who was pretty much convinced I had Wegener's. Before the official diagnosis when I was sent back to him for a biopsy of the sinus he told me that once a year he has a patient where the sinus surgery doesn't appear to fix the problem. That patient usually turns out to have Wegener's. Even though the sinus biopsy didn't show any granulomas he was still convinced it was Wegeners and after my diagnosis he told me I was lucky we didn't have the diagnosis prior to the operation in October last year as he wouldn't have been game to operate but now he is glad we did it and cleared away a lot of diseased tissue. He also told me that he had a number of Wegener's patients and that I was by far in the best situation as far as the sinus, ears and throat went :) So that was comforting.

I was also very lucky that the eye specialist I have been seeing for years for the intermittent eye ulcers has other patients with Wegener's so he knows what to look out for as well.

But my official diagnosis came from the Rheumatologists. And it's the Rheumy is my main treating specialist now.

[LisaT]

Lisa, you are such a good soul. we are blessed to have you with us :wub::hug1:

i am blessed to have found all of you!

[LisaT]

It doesn't say he is interventionary. So far I am pleased with my lung doc. I know that if he thought I needed to see someone else he would have suggested it. I can always ask Specks too if I feel it is necessary.

I'm glad you're in good hands then. I guess I dint want to accept that there's nothing that can be done to help with your lung issues. I feel like there must be something more they could try. I know you're getting the respiratory therapy in July and I'm hoping that will help.

[mishb]

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.

I was diagnosed by an ENT within 5 minutes of walking into his office - when other doctors had no idea for 16 months.
All he said was - "I am pretty sure you have Vargenerrrrs Gran?????osis but you need some blood tests and a biopsy on your sinus to confirm it"
We had no idea what he said - but saw it written on his blood test request.

He is the best :thumbsup:

[pberggren1]

I know Lisa. Your heart is just overflowing with love.