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Thread: Any Advice Welcomed! Just Diagnosed!

  1. #11
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    I appreciate all you have said. I did read so much stuff on the internet. . The information I read scared the crap out of me. Everything was stating that if left untreated for the first year he had a 20% survival rate. No ones life is any more important then the next, but the thought of losing my husband is terrifying! As it has been stated this is VERY new to us. One question I have is.....Is a Lung Specialist suffecient? Or should we go ahead and look for a WEGS specialist? I know he needs to see the Lung Specialist and have the CT taken care of BUT should I research the closest WEG specialist and contact them on my own?

    I'm not sure if they did an urinalys or not.

    The weight loss has been about 7lbs in 3 weeks. . He is a pretty healthy person (Weight wise)

    I can honestly say that reading the post and threads on here have made me feel more at ease with a lot of things. I totally understand that it is a life threatening disease, but I have read some incredible recovery stories as well.
    Last edited by Stephanie78; 04-15-2011 at 07:51 AM.

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    One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.

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    I would definitely get in touch with a Wegs specialist - they told me over and over here to do so and I waited - I wish I had done it earlier! I had mainly sinus involvement in the beginning but by the time I was diagnosed, I also had kidney and limited lung involvement. I now have my Wegs specialist (Dr. Langford at the Cleveland Clinic), my internist, an ENT, a pulmonologist and a nephrologist on my "team."

    I'm 41, 40 when all this started, so right within the age range.

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    Quote Originally Posted by Stephanie78 View Post
    One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.
    I was 28...

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    When I was diagnosed I was NOT to search info out because it didn't apply to me. I supposed it was true to some extend because I maintained for many years on just antibiotics. I do wish I'd educated myself properly in the beginning more to monitored by experts rather than trying to play catch up when it's gotten worse from years improper treatment.

    I am also in NC, in the Raleigh area. I have had horrible experiences with the vasculitis people at UNC and the Duke rheumatology clinic. Dr Nancy Allen (Duke) was recommended by the vasculitis foundation, as well as MaryAnn Dooley (UNC). Neither appear to be accepting patients. He will likely be sent to a colleague, who will supposedly consult with one of them constantly, but in my experience they won't. It took 8 months for my initial appointment, then it took 4-6 months for my 30-day follow up at which point I was given prednisone and told to make an appointment in 2 weeks. No appointments available and they will call me when an appointment opens up. I never told them I've been seen elsewhere because I'm just curious to see how long it takes for my two week period to pass. I think it's been about 2 1/2 months so far. I called at one point with complaints of a severe/sudden worsening of symptoms and was told to find an ENT to help me. They also told me they were seeking an appointment at JHU for me, but turned out Duke never contacted JHU at all.

    I started off at UNC with similar waits for appointments. I got my 30-day follow up in the correct amount of time, but then the next appointment 6 months later I was rescheduled repeatedly before finally being told that the dr had retired - though he still appears on their website (Dr. Berger) - and that was in the early 2000's.

    I just feel like both hospitals have very bad patient relations in terms of customer service, and are so severely overwhelmed by the number of patients and lack of appointments that they're incapable of providing quality care.

    I am trying to get in with the vascultiis clinic at JHU in MD. I am hoping they accept me. They've had my records for a few weeks so hope to hear back soon.

    Welcome to the group - they're full of great advice.

    I was also told I'm too young to have this. I was mid-20's at diagnosis and didn't start really having new issues until the last few years. I'm 36.
    Last edited by LilyPony; 04-15-2011 at 05:50 AM.

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    Quote Originally Posted by Stephanie78 View Post
    One question I have is.....Is a Lung Specialist suffecient? Or should we go ahead and look for a WEGS specialist? I know he needs to see the Lung Specialist and have the CT taken care of BUT should I research the closest WEG specialist and contact them on my own?
    Yes, I recommend traveling to Johns Hopkins in Baltimore. He won't have to go often and can have them oversee his care while he is seen by local docs. It's important to get the very best care right from the start-- you won't regret it. Also, it's best that he gets set up with them now while he's in good enough shape to travel, etc... With Wegs you never know what can happen.

    Any doctor--even a PCP-- can order a chest x-ray or CT. He doesn't need to wait for a pulmonologist to do that.


    I'm not sure if they did an urinalys or not.
    A urinalysis will only screen for kidney problems. Basic blood work will identify kidney function irregularities.
    The weight loss has been about 7lbs in 3 weeks. Unintentional of course. He is a pretty healthy person (Weight wise)
    That is concerning and makes me wonder if he has more systemic involvement.

    Here is the info for JHU:
    http://www.hopkinsvasculitis.org/about/appointments/
    It can take several weeks to get an appt so it's best to start today.

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    Hello, and welcome to our site.

    I agree with Sangye that the weight loss is concerning...I lost 10 lbs (off 140 lbs total still eating just as much) before I was diagnosed. However, I was diagnosed years (probably 5) after I had my first symptoms (which weren't severe and still aren't) so it is definitely not true that the majority of people die within the first year if untreated. However, if left untreated, the WG will eventually get you. My doc treats a woman with sinus involvement only, who has never been treated, only monitored frequently (her own symptom is occasional nosebleeds -- docs happened to do a sinus biopsy and that's how it was caught).

    I'm wondering what showed in your husband's blood work that has them diagnosing WG as well. Obviously, I agree with the others, that he should see a specialist, and that specialist who is a rheumy who treats vasculitis. The problem (as I see it) with being under the care of a pulmy is that they don't treat the whole patient. The rheumy is more like a gp for patients with autoimmune diseases, and they can refer you out to specialists as needed.

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    That really concerns me. I did call Nancy Allens office today and they informed me that my husband can get an appointment with her, however his ENT had to refer him. They could have meant one of the other drs in her office...

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    Ok...questions my husband now has.
    1- Is there a special diet he will have to follow.
    2- After remission, do people have to take medicines for the rest of their lives
    3- Has anyone suffered a stroke who is on this forum? (This has been said to be associated with it) and if so what causes that?
    4- With insurance how much does the medication normally cost
    5- Anyone who has ONLY had the sinus issues...What has it been like? How long before being diagnosed? Treatment? Remission? Anything?

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    Quote Originally Posted by Stephanie78 View Post
    One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.
    I was 26 at diagnosis.
    Nicole

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