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Thread: Newly Diagnosed in NYC

  1. #11
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    Yes, my doctor has at least one such case. 10 years of intermittant nose bleeds, and no medication. Wegs caught only through tissue biopsy. Only time her SED rates were high was when she had a miscarriage. That's not my case though as my inflammation levels are elevated. It will be very interesting to hear what he says next Wednesday. Interesting too that I have the saddle nose and the subglottic stenosis, which are somewhat rare, and are not indicative of active disease, according to the ENT. My throat in particular isn't inflammed at all.

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    Hi Jan~ I too was told I have limited wegs. I was diagnosed in Sept 09. I have a lot of inflammation in my nose and had saddle nose deformity. ENT took cartilage behind my ear and used it on my nose to make my nose look bettter. I also have subglotic stenosis, (they are not doing anything about that right now). I had small spots on my lungs too. All of my biopsies were negative for wegeners but my nose biopsy was so inflammed and that was enough for them to diagnose me with wegeners, and my blood work has always been good. I am on steroids, methotrexate, pholic acid, bactrim and zoloft (for anxiety I get from steroids.) I started with 20 mg steroids in October 09 and started methotrexate in Nov 09. What are your symptoms with sub stenosis? Do you cough a lot? wheeze? I do. They say I also have asthma, with was diagnosed in aug 08.

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    Brooke, I really think the asthma thing is damage from the Wegeners disease. But I could be wrong....hasn't been the first time.

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    I know, I am thinking the same thing. I've never had any asthma related problems as a kid or growing up. I see my pulmonologist tomorrow, ct scan, and breathing test. I will ask him what he thinks. I think they want me still on my symbicort to help with inflammation in my airways. Maybe symbicort won't help that anyways?

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    It should help because it's a type of steriod that reduces inflammation in the lungs. I have not used the Advair yet. I never had asthma as a kid either.

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    Hi Jan, and welcome to the group! I'm happy to hear they caught your Wegs before it progressed much further. Like Jack, I dislike the term "limited" since it connotes a different and milder disease process. It only means the Wegs has remained limited to particular areas-- generally not kidneys.

    From my conversations with my Wegs doc at JHU, I think the longer someone has only limited areas involved, the more likely it will remain so. I've never had kidney involvement, and it's been 4.5 yrs since onset of symptoms. He said he'd be completely shocked if I ever developed kidney trouble from Wegs. It happens, though. He has a patient who had limited Wegs for 9 yrs and then suddenly developed kidney problems.

    Limited or not, I've never heard of someone only being given pred. That was the original way Wegs was treated and had a 50% mortality rate within a year of diagnosis.

    What happened to your ankle? Weggies often have ankle pain and swelling. Achilles tendon pain was my first symptom, long before anything fancier happened. It acted exactly like tendinitis. Even though my Wegs doc is a VF Wegs specialist, he still occasionally expresses doubt about some of the symptoms that I know are Wegs.

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    You have just reminded me - I went through a period of tendonitis too (it seems like I've had most things ! ). It was a good while ago when my disease was more active so I would think it is another symptom of Wegener's.

  8. #18
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    My doc doesn't think that the ankle problem is due to tendonitis -- more likely an injury although of unknown origin (I was doing some yoga and other new exercising that I had done before over this summer, and the onset was gradual). I was diagnosed with a stress reaction on the MRI that the podiatrist ordered, essentially saying that because of the pain in my foot I altered my gait sufficiently to cause pain and swelling in several of the bones around the back of the foot. I did have bilaterial foot pain initially -- this started back in June around the same time that I had the sinus problems, so I wouldn't be surprised if it was all part of the flare that landed me here, even though the rheumo doesn't believe it. It is clearing up though, and hopefully whatever meds he puts me on next week will speed its course.

    Brooke -- my symptoms are wheezing (on inhalation and expiration -- this is important, asthmatics don't typically wheeze when breathing in), and a lot of throat clearing. They want to operate on me because my stenosis means that the opening for air is less than 50 percent of what is should be -- that seems to be the dividing line between the risk of making worse and having to operate because you run the risk of total airway collaspe. I am visiting my pulmo today. The ENT said that when they run the flow volume loop portion of a breathing test they should be able to see where the obstruction is -- lungs vs. higher up in the airway. Another good test for yourself is seeing how high you can go on your peak flow meter -- I never got above 240, and for a person of my size 5' 3", 120 lbs, I should have been around 400.

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    My Achilles tendon pain began about 2 weeks after a bad fall on ice. It seemed to be a result of the fall and we treated it as tendinitis--no other symptoms. It wouldn't resolve, though, and I had to stop my daily hiking. Six months after it began, I woke up with severe joint pain in one finger. It progressed from there. I never thought it was connected to the Wegs until about a year after diagnosis (2.5 yrs after the original fall), when I got the exact pain in both Achilles tendons along with other Wegs symptoms.

    Injuries and symptoms of "unknown origin" are most likely Wegs. Unresponsive infections, too. You'll be surprised how many costumes that disease can wear! I hope you don't experience them personally, though. If you read enough of the stories on here you'll get an appreciation for the Wegs Wardrobe.

  10. #20
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    I think a lot of the symptoms are not documented in medical papers which accounts for the skepticism of many specialists when they hear about problems that don't go by the book. This leads them into treating as an injury or infection.

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