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Thread: Glad to be diagnosed

  1. #21
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    Quote Originally Posted by Psyborg View Post
    I'm totally with you there. I'm so afraid that someone will think I'm being a hypochondriac that I tend to downplay my symptoms. I think that honestly, in my case, it's because my parents are both nurses and I grew up hearing the horror stories about people going on at length about issues that they didn't really have. So I conditioned myself eventually to tend to ignore things, that and I have a relatively high level of pain tolerance. That said my parents are the first to tell me I should be telling the doctor all my symptoms, so it's really my own psychosis on that part
    I think this, and a little bit of proffit mindedness, are responsible for the numerous signs popping up at doctor's offices around the city (haven't seen any in our little town - yet) that irritate me to no end... "one symptom per doctor visit". Can you imagine where we would all be if we told our doctors one symptom at a time and got treated for such? Six feet under is the appropriate response. It's something that totally freaks me out, enrages me and makes me feel like many doctors have either forgotten why they became doctors in the first place or became doctors for the wrong reason. I know that there are hypochondriacs out there, but shouldn't the system work in the favour of those who need the help instead of punishing them for the shortcomings of others.

    There, I ranted. Thanks for indulging me.

    Psyborg, I feel the same. I feel I often downplay what I'm feeling, not sure what my reason for doing this is - wanna be a supermom, don't want to be perceived as a whimp, not sure if what I'm feeling is normal and I'm over-reacting in my new hyper-self-aware state.... I honestly don't know. One thing though, I am way better at speaking up for myself and figuring out how to get heard when I'm at the doctor's office. Not quite where I want to be, but being a Weggie, I'm sure I'll get the necessary practice to assert myself more and more.

    Geoff - take care of youself friend. Hopefully pred alone will stop things from progressing further, and you'll feel better in no time. Big hugs from across the ocean.

  2. #22
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    Quote Originally Posted by marta View Post
    I think this, and a little bit of proffit mindedness, are responsible for the numerous signs popping up at doctor's offices around the city (haven't seen any in our little town - yet) that irritate me to no end... "one symptom per doctor visit". Can you imagine where we would all be if we told our doctors one symptom at a time and got treated for such? Six feet under is the appropriate response. It's something that totally freaks me out, enrages me and makes me feel like many doctors have either forgotten why they became doctors in the first place or became doctors for the wrong reason. I know that there are hypochondriacs out there, but shouldn't the system work in the favour of those who need the help instead of punishing them for the shortcomings of others.

    There, I ranted. Thanks for indulging me.

    Psyborg, I feel the same. I feel I often downplay what I'm feeling, not sure what my reason for doing this is - wanna be a supermom, don't want to be perceived as a whimp, not sure if what I'm feeling is normal and I'm over-reacting in my new hyper-self-aware state.... I honestly don't know. One thing though, I am way better at speaking up for myself and figuring out how to get heard when I'm at the doctor's office. Not quite where I want to be, but being a Weggie, I'm sure I'll get the necessary practice to assert myself more and more.

    Geoff - take care of youself friend. Hopefully pred alone will stop things from progressing further, and you'll feel better in no time. Big hugs from across the ocean.
    "One symptom per doctor visit" Are you serious Marta? That is totally insane. My doc said that when one chooses to practice medicine that they choose to treat fellow humans and to help them as much as possible and that working long hours and nights is part of the job. He also said that a doctor should make themselves easily available to their patients and to take the time to listen to them and not just push pills.

    I also watched a documentary about mental illness and how it is severely downplayed by mainstream medicine. It was on PBS last night. I forget who directed it, Joe Palot.......something or other, he is an actor I recognize from the movie "Momento." Anyway I had already discussed this with my doc a couple of months ago and he said it is very common that when a patient presents with mental illness the doctor no longer takes the patient seriously and treats them much differently. He said it is very sad this happens but there is a stereotype of people with mental illness that groups all people with mental illness into one pot.

  3. #23
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    That is very sad, there are so many people who are mentally ill and don't come out secondary to the fear of being stigmatised.

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    Quote Originally Posted by Geoff View Post
    Ahmen to that Sangye!
    Stop me if I have missed something posted somewhere, but has anybody come up with a definitive reason as to why this joint pain( and muscular for that) increases in intensity at almost definable times of the day (for me, late afternoon and then intensifying thru the night) only to dissapate come the morning?
    I recall the blank expression on a doctors face (before my DX) when i was trying to gather together all the variety of syptioms for an explanation.
    I had the exact same thing. I could set my clock by it, actually. Each day I had a window from 10am to 4pm where the pain was much less. It was still horrific, but nothing like what happened outside those hours. I don't even have an adjective to describe that.

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    Even if they aren't posting it, most PCPs (GPs) in the US are also going by the "one symptom per visit" rule these days. It's a diagnostic nightmare. Most diseases present with a constellation of symptoms that lead the doctor to a diagnosis. Also, the number one rule you're taught in diagnosis is to listen to the patient-- 99% of a dx comes from the history. The exam and diagnostic tests just narrow it down and confirm the dx.

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    I'm pretty sure this is why i had two stupid rheumy's turn me away, they had latched on to a false positive for malaria and refused to look beyond very basic rheumatolgical testing. Oddly it was my hematologist, who it turns out I didn't need to even see, that called that it was a rheumatological disease. Though he picked the wrong one, he probably saved my life.

    Funny thing is my last rheumy also discounted that it was WG because he had decided I didn't have granulomas in my lungs it must be something else, even with c-anca at 9.1. I went home and looked it up and realized I never mentioned the shortness of breath or the tracheal thickening to him because my ENT said it was from acid reflux. Basically I got very lucky because if I hadn't requested prednisone from my PCP I would have probably progressed much further during this run around.

  7. #27
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    Psyborg ~Looking back, I feel very lucky my pulmonolgist made some very right decisions in diagnosing and treating the WG, and, more importantly, helping me make the right decision to follow his advice to go to Denver for the treatment that brought me back to healing instead of my body continuing to shut down and die. He always gives me the facts, straight forwardly, in his calm, quiet manner, and answers questions completely. Your hematologist is the first one to be the one hero of a weggie diagnosis story!

  8. #28
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    Quote Originally Posted by marta View Post
    I just read this Geoff. I can't say I had any joint pains, all of my pain was in my head and ears, but if I remember correctly, the time frames were the same as yours. I would wake up relatively ok, and it would ramp up during the day and would get crazy in the evening, and insane during the night. This got progressively worse until I just couldn't sleep at night and the days became part of the night so I would hurt all the time (this last part only lasted a couple of weeks at most as I ended up going to emergency three times - the third being the magic visit that got me my dream team and diagnosis). It's an interesting correlation. I wonder if other people's symptoms worked on the same schedule, and if there is a physiological reason for the correlation.
    Hi Marta. I read your blog yesterday and its very interesting to read. And well done with the clothing etc. I will definately be buying some items. I've just read the above post and thought I'd add my two penneth. Mark followed the same pattern quote - "it would ramp up during the day and would get crazy in the evening, and insane during the night.". He would go to work, be fine during the day, then, when he came home in the afternoon he would start to feel rubbish - headache would start to come on and get progressively worse so by night-time he'd be in agony with it and describing it as unbearable throbing like his head would explode. His pain was all round his head, sinuses, and his teeth and he had a sunburnt feeling on the top of his head. His nose was blocked for 3 months but constantly running bloody fluid for weeks. He was blaming it on the house or it must be something in the house at one point. When it got so he couldn't go to work anymore as he was in constant severe pain in his head the top of his nose swelled which was scary, like the size of a ping pong ball. I wonder why the wegeners symptoms get worse at night.

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    Quote Originally Posted by staystronglivelong View Post
    Hi Marta. I read your blog yesterday and its very interesting to read. And well done with the clothing etc. I will definately be buying some items. I've just read the above post and thought I'd add my two penneth. Mark followed the same pattern quote - "it would ramp up during the day and would get crazy in the evening, and insane during the night.". He would go to work, be fine during the day, then, when he came home in the afternoon he would start to feel rubbish - headache would start to come on and get progressively worse so by night-time he'd be in agony with it and describing it as unbearable throbing like his head would explode. His pain was all round his head, sinuses, and his teeth and he had a sunburnt feeling on the top of his head. His nose was blocked for 3 months but constantly running bloody fluid for weeks. He was blaming it on the house or it must be something in the house at one point. When it got so he couldn't go to work anymore as he was in constant severe pain in his head the top of his nose swelled which was scary, like the size of a ping pong ball. I wonder why the wegeners symptoms get worse at night.
    Mark also had no sense of taste for months leading upto his diagnosis and treatment and loss of hearing intermittently - he never went deaf but it would come and go like his ear felt blocked. Once they put him on the high dose pred he felt better immediately.

  10. #30
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    Quote Originally Posted by staystronglivelong View Post
    . He was blaming it on the house or it must be something in the house at one point.
    I remember seeing someone who tested me for allergies as it was the only thing that I could think of that might account for my sinus issue and hearing loss. The consultant said I was allergic to yeast and told me to stop drinking beer and wine as well as reduce or eliminate other food items. It was the worst diagnosis I have ever heard!! The totally bizarre issue was that I had to send a sample of poo thru the post to a lab in Germany. I couldnt keep a straight face when the assistant in the Post Office asked me for the value of the parcel and did I want to insure it.

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