User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 27

Thread: what age did you first have this?

  1. #1
    Join Date
    Jul 2012
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default what age did you first have this?

    Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?

  2. #2
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Betska View Post
    Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?
    Often you see demographic descriptions of the "typical" Weggie, Betska: upper middle-aged male or female, more often white than black, etc. But the fact is, Wegs is an equal-opportunity scourge. Regardless of race, creed, national origin, or age, we somehow got on the list. There have been (on the forum) reports of 3 year olds. I was diagnosed at 61, though I suspect the disease itself was in place some years before that. Still, is makes me very sad to hear of younger people looking forward to a lifetime of nasty drugs.

    A few of us had had transplants, or see such possibly in our futures. This is always a desperation move, and never an elective procedure. For one thing, WG is not actually cured by new organs. In fact, a transplanted kidney, say, can then be attacked in precisely the same way as the old one.

    I hope this helps.

    Al

  3. #3
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Betska,

    I was 44 when diagnosed mainly with all head related....sinus, ears, eyes. And then there are the roving joint pains.

    On this forum and also on a fb support group, there are many young adults, teenagers and children with WG. It's not particularly fussy, it tackles the best of us.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  4. #4
    Join Date
    Nov 2009
    Location
    UK, Essex
    Posts
    131
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm 24 now and I had my first symptoms about a month before my 16th birthday and was diagnosed about 2 months after my birthday. My initial symptoms was ear involvment, at first doctors just thought I had a very bad "dual" ear infection but it didn't respond to any antibiotics and was quickly getting worse, when I finally got diagnosed I had been in hospital for a week due to severe pain, I was practically deaf on both ears and was not really concious, I was awake but I wasn't really "there" if you know what I mean. I had extreme fatigue and was very weak. Once I got the right treatment I started getting better although it took me quite a while to come back to a more "normal" state

  5. #5
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Betska,

    I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

    Pete
    dx 1/11

  6. #6
    Join Date
    Jul 2012
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default different ages

    Quote Originally Posted by Pete View Post
    Hi Betska,

    I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

    Pete
    dx 1/11
    yes I see just from these few posts its any ages but what I see as a common early onset is nasal,throat ear infections, makes me wonder if this original infection is a super bug we hear about that some peoples immune system cant fight and it turns on itself. We are told not so much it only ever hits the older people but in this area he is the youngest most are 45 plus we also were told it hits a big proportion of under 5yr olds.I am concerned for his sister, shes constantly got sinus infections that no treatment gets rid of, maybe she should have some tests to make sure its not in her as well , I did wonder about how putting in another kidney would help being this disease is in his system so basically itll just attack the new kidney, or so I assume. Not sure what % of function he has but I know both kidneys are badly damaged, hes really unwell right now but trying to live normal even going to play soccer tomorrow

  7. #7
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I was diagnosed last year at age 58, but in retrospect must have had it for at least 2.5 years before that. When the drama started was, like in Malin's case, with a double ear infection that was resistant to antibiotics. It was finally killed, apparently, by the big-gun antibiotic Levaquin. But that was followed by recurring sinus infections, hearing problems, voice problems, joint pains that came and went, etc. I got along that way until 2011, when it hit my lungs badly; I thought I had pneumonia, so I got some tests and the rest is history. I've often wondered, as have others with WG, if there were signs much earlier in life of a predisposition to this. It hasn't been thought of as genetic or inherited, but I just saw a recent post from Palmyra about a new study suggesting otherwise.
    Anne, dx'ed April 2011

  8. #8
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I meant to comment on your idea of the "super bug". When I got the antibiotic-resistant double ear infection, even though it was eventually knocked out by Levaquin, my ENT was pretty mystified by it and called it a "really weird bug" and said he'd only seen one case before of one so hard to kill. He took a culture of it but it couldn't be identified, because he waited too long or for whatever reason. Then he put me on a course of strong intravenous antibiotic for several days to guard against mastoiditis. I have to wonder if it was an infection at all or WG mimicking one. But they do say WG can be triggered by infections, and it did appear to die with a strong enough antibiotic. So, who knows.
    Anne, dx'ed April 2011

  9. #9
    Join Date
    May 2011
    Location
    Lima, ohio
    Posts
    163
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I was 23 but it took them a year and a half to diagnose me. It started with joint pain and fatigue and hearing loss.

  10. #10
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    26..........
    Phil Berggren, dx 2003

Page 1 of 3 123 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •