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Thread: A story much like yours....

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    Default A story much like yours....

    Dave here. How ya doin'? Husband and Father of two boys, 14 and 12.

    April of 2011 - Had a birthday party for my oldest son, who was turning 13. We played AirSoft in the woods behind our home. The next morning, as usual, I was feeling stiff after running / jumping through the woods in heavy ballistic gear.

    The soreness didn't go away, it got worse... then I had an epic, 13 hour long nose bleed. It was awesome.

    Soon, I couldn't lift a drinking cup to my mouth without being in significant pain...

    Went to see the Doctor - in the woods, eh? Well, it's Lyme Disease, maybe Rocky Mountain Spotted Fever, etc.

    All those tests came back negative.

    4 months go by, I'm still in severe pain, Doctors have no clue. I was now almost blind in my left eye, both eyes were VERY red, so I have an intra-ocular specialist, a rheumatologist, and my family physician.

    I got bumps on my arms that looked weird. I started seeing an ENT doctor too - my sinuses were crazy.

    ENT had a conclusion - Vasculitis.
    Dermatologist did a biopsy - Vasculitis.
    Intra-Ocular guru took some photos / scans - Vasculitis.

    Rheumatologist diagnosed me with WG. After he found this out, he took me immediately to the Infusion Lab and I got 500MG of steroids. Yay.

    Since then, I've lived the life of Prednisone, Cytoxan, Bactrim and Pain Meds.

    The weight gain has been awful. Over 60lbs. I'm just now bouncing back.

    A month ago, they observed that I had no potassium or hemoglobin in my blood. They were trying to call me but I was busy with my Boy Scouts hiking up a mountain - in which I had extreme difficulty, and couldn't understand why... well, I found out when I answered the phone a few days later!

    I went off the chemo for a couple of weeks, and started a potassium suppliment. When I stopped the Cytoxan, it immediately flared up and caused inflammation in my brain, which has now made me cross-eyed as the day progresses. There's no consistency, so they can't solve it with prism lenses.

    I draw pictures for a living. This is not cool.

    Back on cytoxan, ramping down the Prednisone, weight is starting to come off. Working out at the gym 5 days a week and eating a healthy diet.

    Funny part is, this disease is the best thing that has ever happened to me. I feel like I won the lottery. Since you've endured this mile-long post, I'll share that with you soon.

    Have a good one,
    Davey

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    Not, unfortunately, an untypical story, Davey. These things are difficult to diagnose, and it often takes a long time and a lot of mis-direction to get there. I'm glad you are taking care of yourself the best you can, considering. But remember that it isn't just about doing "everything right"; there is a lot of complicated stuff going on. As you are in North Carolina, I hope you are availing yourself to the expertise at Chapel Hill, which has a fine vasculitis center.

    Yes, please let us know the rest of your story!

    Al

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    Welcome Davey...a story much like all of ours...sheesh, one we would rather not have to tell...but it's good you're on here to tell it, could have been worse! Sounds as if you're doing the things that help...as Al says, make sure you get a WG specialist to at least advise and communicate with your present docs. I get the weight gain as I'm 6' 1" and have zoomed up to 250 over the last year on pred...and I'm very active...just won't go away...but I'm weaning off it now, so hopes are good. As yours should be...best of luck...keep us informed, there are many on here who are well versed medically speaking & just a lot of stories of WG from which you can glean your own useful info. Remember, WE are on the inside of this insidious little disease and the docs are on the outside...keep them informed, ask millyuns of questions, and keep up the good fight!!!

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    Welcome to our world, Davey. Wish you didn't have to be here, but since you have our odd disease, I hope you'll find this site to be a useful resource. I wholeheartedly support Al and Don's advice to find and work with a wegs specialist. I just did (at Cleveland Clinic) and she's been very helpful. Keep on enjoying your life and focus on what you can do instead of what the disease may take away occasionally. Hope to hear from you as you deal with our sneaky friend.

    Pete
    dx 1/11

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    Welcome to our greatest source of information group. Sounds like you are doing pretty good mentally,with excepting the dx you've been given. I'm so glad that you are able to stay active, espically with having two boys at that age. Remember to always ask to drs. questions on something that isn't clear to you. Best of luck!

    Jana

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    Welcome Davey
    ~ Bob

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    Welcome Davey, I live in SC! I make a yearly trip to Cleveland CLinic and see a wegeners specialist. Keep us posted.

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    Welcome to the group, Davey. I like how you wrote your story. I'm really hoping you are seeing a Wegs specialist (ie, not just a rheumatologist). CNS involvement is very difficult to treat. It's great that you can be so active though.

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    Quote Originally Posted by elephant View Post
    I make a yearly trip to Cleveland CLinic and see a wegeners specialist.
    What's the name of your specialist at the CC?

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  10. #10
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    Quote Originally Posted by Al View Post
    As you are in North Carolina, I hope you are availing yourself to the expertise at Chapel Hill, which has a fine vasculitis center.
    Hi Al -- Do you have the name of particular WG specialist at UNC?

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

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