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Thread: Hello - I'm New! :)

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    Default Hello - I'm New! :)

    Hello All - my name is Holly and I am 33 (well, 34 in a couple wks:rolleyes1: ).

    I have not officially been diagnosed BUT will probably have it in writing by Monday after we get the test results in but after 2.5 yrs, my Rheumy is VERY confident that I have WG. He's suspected for awhile, but we just have not been able to cinch the dx. With my most recent flare, and some newer symptoms, he is 99% sure. And I have to say, after reading through this site and all of your stories/testimonies I finally feel like there are others out there dealing with the same thing as me. Your stories are so similar to mine. So here it goes....

    In Sept. 2009 I developed a cough, I suspected I was getting my yearly bronchitis visit, little did I know this was the start to a VERY long road and journey I never anticipated. I had just quit my job and was in between insurances, waiting to be put on my hubby's. I was kind of hoping the bronchitis would clear up on it's own and so i didn't rush to a doc, and it came on slowly, over a couple of weeks. After about 4 wks and to a point where I felt like an elephant was constantly on top of my chest, and could barely get air in, I broke down and went to the urgent care. Dx me with bronchitis, gave me some inhalers, and antibiotics and sent me on my way. Two days later, not only was I not getting better I was getting wrost. You could actually hear me trying to breath from across the room, I just could not get any air in my lungs. Again, I broke down and went and saw my PCP. She put me on heavy duty antibiotics, prednisone, and another inhaler. Did a breathing treatment, and tested my breathing levels, which sucked.

    I did begin to improve. She had told me that it would probably be a couple months before I officially stopped coughing. It should improve but because I was so bad that I would have a lingering cough for awhile. I did get better, I could breath again but the cough lingered (like she said). After the meds were done, my cough would just get worst again. Back to the doc, more steriods & antibiotics & breathing treatments. LONG story short - this went on for 6 (Yes SIX months). I was on and off meds all this time. Get better, then get worst. It was so frustrating. They thought I had developed severe allergies. I was like WHAT?! How does a person all of a sudden one day develop severe allergeis overnight. I have been around nearly every kind of animal out there all my life. Grew up on the farm, always have had all sorts of pets, and now out of nowhere they are killing me? I just did not believe it. I really questioned this!

    Finally in Feb. 2010 my cough just one day stopped! No rhyme or reason, just quit. I didn't know why, and I didn't care (at the time). I was happy to just not be hacking every day, all day.

    However, in March 2010 I started having (what I called at the time) attacks. I would wake up with a coughing fit, then within 10 mins to 2 hrs would start having severe pains starting in my legs and working it's way up through my whole body, and also produce a fever - ranging from 99.0-104.0. The best way to describe it to people was it was like having the flu times 400! And I feel like I am going to freeze to death. I would cover myself in up to 6 big heavy comforters/blankets (and I live in FL, so it's not cold here). My face swells up and turns bright red. It would last for hours, and usually by the evening would have settled enough that I could get out bed and use the bathroom.

    Again no rhyme or reason as to when I would have these attacks. I didn't know what in the world was happening. Somedays I would be fine and others I wouldn't. And then the fatigue, oh the fatigue - I could barely get out of bed most of the time. It was like I could never get enough sleep. I couldn't be expected to do anything before 10am in the morning. I was sleeping pretty much all the time. Plus I had also been developing these very random sinus infections. I would be fine one minute and then 2 seconds later be filled with snot and mucus and couldn't breathe and even more weird, it would only last a day or two and then just go away, as fast as it would come on. I thought I had gone crazy! I didn't even want to tell anyone because who goes from being absolutely fine one day to bed ridden the next? I just couldn't make sense of it. I was actually able to hide this from my husband for about 9 months. And then when I did finally start letting him into the issues I had been having, he just thought I had a weird viral thing, which is what I thought too.

    Finally i started to tell doctors about this, all though, some of the symptoms I did not link them all together. Anyhow, no one had any answers for me, kept saying I had developed asthma and allergies. Which I still did not believe.

    After a year of dealing with everything, I really started to become my own advocate and started doing my own research online. I have a sister with Rheumatological issues, and so I thought maybe I should start there. And I am glad I did. I couldn't find anything to completely matched up to all my symptoms, however, based on everything i was going through, I really felt in my heart this was Rheumatic in nature. But I had NO idea how or what. My PCP agreed to give me a referral to a Rheumy, and the one she did give me to, they couldn't see me for another 3 months. I was like "Oh hell no! I don't know if I will be alive for another 3 months". I had done my own research and found a Rheumy about 45 mins from me, I called their office and they had just had a cancellation prior to my call and could get me in that afternoon. I almost fell out of my chair. I mad arrangements for my kids to be picked and I went. And I have to say my Rheumy is one of the best - he was a God send, I believe that with all my heart!

    Anyhow, he has been following me very closely for a year now, and has always said that the road to a dx would not be an easy one. But from day one he suspected vasculitis, but he couldn't pin down exactly which one. Though he did suspect either WG or PAN. He has refused to actually dx me right now because we just have not had that cincher, but I think we have it now.

    He is treating me, as best he can, based on blood results (which have not been all that helpful), symptoms, and physical symptoms (he sees me almost every time I have a flare).

    I have been on a couple meds. Would do well in the beginning, but it seems that after awhile my body adjusts and the flares start again. I should also say that one of my other symptoms is random nose bleeds, not like gushing blood, but when I blow, and then I would have huge clots come out. Plus I kept developing small ulcers in my nose. My Rheumy sent me to an ENT but she was like well those could be from irritation (basically saying I picked my nose). But I was like I don't, which she didn't believe me, so i wasn't going to press the issue, and said there wasn't anything she could. So, no nose biopsy.

    My kidneys have been fine (praise the Lord), so nothing to biopsy there.

    On Jan 1, 2012, I was awoken with a horrible coughing attack and just could not catch my breath for anything. I ended up in the ER (for the first time), found out I had what looked to be pneumonia, and so they admitted me. Started me on antibiotics and prednisone. And of course the docs had no idea what was wrong.

    I went and saw my Rheumy the day after I got out of the hospital and said that this was never going to be an easy or short. I have been slowly coming off the prednisone from the hospital and once I got down to 20 mgs (this week), my cough started back up. A really nagging one. I went back saw my Rheumy and he said that it wasn't my lungs, that it was my throat and that my airways in my through were narrowing, and that this was what we were looking for. He sent my straight away to get an xray, and we should have the results by Monday. If the xrays show what we were are quite certain, that my airways are narrowing, then we know we are dealing with WG. And that it was NOT pneumonia, but WG in my lungs.

    That's the jist of my story, and sadly I left quite a bit out. But those are the basics and most important. I'm ready for this part of the journey to be over. He told me that he plans to start my on Rituxan as soon as we get the official results back, and to change my current meds around a bit. Right now I am on MTX, folic acid, naproxen (for joint pain, mostly my hands and wrists), and prednisone (thoughing tapering off).

    Anyhow, thanks for listening/reading! And I am glad to have found this forum.

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    Hjyon,
    First of all welcome to this site. Sorry that you had to find it for all of the reasons that brought all of us here but you will find a lot of good caring people to talk with and share your issues. It really helps as you go down this road.
    Sure sounds like Wegs. Have they done a biopsy of your lungs? I know when the docs were trying to figure mine out the only way they could know for sure was to do a biopsy. As you will find this friend that we all have in common is very sneeky and for ever changing colors.

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    Hey Dumpy,

    Thanks for the reply! It's so nice to finally feel like I am not alone or crazy for that matter. It's been a long, hard, scary road, but I am thankful for others to share this journey with now. I suspect my doc will do a biopsy next of my lungs if the xrays don't show the change in my soft tissue in my throat area. I think he would rather not have to do a biopsy of my lungs if we absolutely don't have to. But I am might even insist on it at this point, just get some more definitive answers.

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    You've been through a lot, Holly, and it sounds a lot like classic WG. And your story of trying to get a diagnosis is, unfortunately, a familiar one to many of us. To be fair, diagnosis is indeed a tricky art. But in the meantime, real people suffer and hurt. I'm glad you found a rheumy you like and can trust. But it always bothers me when it takes so long to do the definitive tests. You can can get a strong indication from the ANCA test, but, in most cases, a biopsy is the gold standard for confirmation. Please let us know how it goies down with you!

    Al

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    Welcome to the group, Hiyon! I went through some of the same stuff, but not with as many constant dramatic changes. Mainly sinus and ear problems to start, then some joint pain, then it went into my lungs, and I, too, thought I had pneumonia. A CT scan of the lungs revealed many cavitary lesions which suggested Wegs. Around that time, my septum collapsed and I noticed I had a saddle nose. A biopsy of my septum by my ENT confirmed the dx. So, even though I had symptoms for a couple of years before, when it came time to get a dx, it was pretty straightforward. I, too, had inconclusive blood results, so getting the biopsy done so fast was great. I'm glad they didn't have to biopsy my lungs (which cleared up pretty fast with the meds, BTW), and also thankful for no kidney involvement so far. I wonder if a nasal biopsy would work for you instead of the lungs, since I'm assuming it is much simpler.

    Anne

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    HI! nice 2 get to know a bit about you! welcome!
    Experience is the only way to survive. <3 Rini Orange

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    Hello Holly, welcome for better or worse...great place to 'listen & learn' on this forum. Continue your persistence, it is/will be a longer road than we want or expect sometimes...good days, bad days...be patient & determined to win! Best to you!

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    Thanks everyone for all the warm and encouraging welcomes! I am hoping tomorrow to have my xray results back and hopefully we can start some more aggressive treatment and get this under better control. I am tired of the flares and being sick all the time. I do competely trust my Rheumy, he is really amazing and one of a kind, and knows his stuff. I am in healthcare and am VERY picky about doctors and don't put up with anything from them, if they show any kind of incompetence I won't stand for it. He is very much on top of this and has been from the get go. Even without a definitive answer he has been treating me as best as possible. I am on 8/2.5mg MTX weekly, down to 10mg of prednisone, Naproxen, and folic acid. Which I have to say I am doing much better with the meds, then I ever did without them. My flares are fewer in between, then when I wasn't being treated. I will let you guys know if I hear anything tomorrow. Thanks again for the support!

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    Quote Originally Posted by hjyon View Post
    ....I am in healthcare and am VERY picky about doctors and don't put up with anything from them, if they show any kind of incompetence I won't stand for it....
    Good for you, Holly! Many of us have learned this the hard way. It's great that you are starting off with this attitude!

    Al

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    Hi Holly:

    Why hasn't your Rhuemy ordered a CT of your chest? If he suspects lung involvement then this is a good way to go for dx and will be a usefull guideline down the road for future flares and other problems.

    What is your ANCA results? ESR and CRP?
    Phil Berggren, dx 2003

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