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Thread: 2 and a half years of doctors...

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    Default 2 and a half years of doctors...

    Hey All-

    I've been seeing a rheumatologist and a neurologist since spring of 2012 when I was hospitalized with difficulty breathing and loss of sensation on my left side. My doctors have thought I've had, sarcoidosis (my dad has it), celiac disease, pernicious anemia, lupus, MS, and have sort of settled on undifferentiated connective tissue disease recently. Other than a positive ANA, and a neurological diagnosis of myelitis...my doctors don't seem to know what is going on with me. I've had ultrasounds of weird large swollen bruises that appeared mysteriously on the web of my hand and in my elbow that were inconclusive. I've had a couple chest xrays that showed that there night be something going on in my lungs but my chest CT was negative for sarcoidosis but showed "a few subpleural opacities which are nonspecific.One for example measuring 2 x 3 mm is seen in the periphery left upper lobe/lingula on 2/98. Findings suggest minimal scar"..whatever that means. This spring my Dr thought I might have a CSF leak because of the massive amount of watery discharge pouring out of my nose, but my neuorologist concluded it was a cyst in my sinuses. I had been free of any serious symptoms for almost a year but got the flu a few weeks ago and after I got better had a major "flare" ...I've been coughing up small amounts of blood for a week and am seeing the Dr. tomorrow. I came here because I was googling autoimmune conditions where people cough up blood and saw Wegener's...I probably just have pneumonia or some thing but I thought I'd post here to see if my history sounds familiar to anyone...just trying to get myself sorted out....many thanks

    -j

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    Welcome evilx, huh? Sounds like you have a lot going on...much of it sounds like WG but until docs get smarter and go for a lung or some kind of tissue sample where the problem is active, they may not figure it out exactly. The seemingly benign scars on lungs, blood out of nasal area, bruising or rashes, coughing, and all the misdiagnoses make it sound very much like a WG dx waiting to happen. 'Might be' is a common phrase in dx of WG and other AIs...keep on the docs for a specific dx, don't wait long, don't take 'I'm not sure' for an answer. Best to you, be proactive!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I agree with don. You may not have WG but having said that my diagnosis was a 2 and a half week hospital stay where they went thru a lot of possibilities. Initially they figured I had pneumonia with a abscess. So definitely be proactive. Yes that may be all it is but in saying that do not accept a may be only accept a definite answer.

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    It took 2.5 years of symptoms for me, too, before anyone got a clue that it could be Wegs. But my symptoms were not as unusual as yours, and it was all chalked up to sinus and ear infections and other problems due to allergies. So of course they went with that, since a lot of people have those issues. You having more unusual symptoms should lead them to try a little harder, do some tests, and yes, take a biopsy to rule out or confirm WG. Coughing up blood is a definite symptom for some people. And by the way, welcome to the forum. I hope you don't have WG, but whether you do or not, we are glad to provide a place for you to talk about what is going on with you.
    Anne, dx'ed April 2011

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    I went through 4 years of virtually constant sinus infections. Nobody ever found wegeners then, it wasn't until I broke out in a rash and got really sick that they started looking closer. Wegs had turned to my kidneys and took them out in very short order and it was that which landed me in the hospital. To this day I still strongly suspect I had Wegener's for years hiding in my sinuses and it was just waiting for a little stress in my life to kick in and move to my kidneys.

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    For me, it moved into my lungs, and that got their attention, once they realized it was probably something more serious than pneumonia. I made it a month or two with the lung stuff, and me thinking it was asthma, sinus drainage, etc., until I started coughing up blood, though not a lot, feeling pleural rubs on breathing and lung pain on coughing, and having night sweats and just feeling weaker and sicker each day. Thank goodness there was no kidney involvement, but it is always important to keep in mind how quickly it can strike.
    Anne, dx'ed April 2011

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