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Thread: my vent rant

  1. #11
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    Flu shot was on October 14 and my blood test with the ESRspike was October 15 ( I just had to look at my calendar to double check) I'm also sportin' a bladder infection - I know those pretty well, and will have to wait for Monday to get some antibiotics to take care of that bad boy. That's really frightening about flu shots triggering a full-blown flare. I've never - NEVER -had them before and they strongly recommended that I get them when I left the hospital in May. It made sense to me despite the fact that I've never been a big fan of the idea. Oh well, we'll figure it out and things will get better again in no time, I'm certain. If I have a flare then I have a flare. Despite the fact that I don't like the idea much, I know that upping the meds will take care of it and I'm OK with that, what I don't like is letting it smolder and cause damage without me knowing if it is active.

    Monday, Monday...... ta daa, ta di da da...

  2. #12
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    Marta, I'm so sorry recieved that kind of treatment. It is absolutly outrageous - and thats even if you HAVE cold. You should not have been talked to that way. Unfortunatly I have had similar experience with some doctors so I know how it feels. The worst of it is is that they are hitting you when you are down. I'm very impressed with the great questions you came up with and the way you dealt with it.
    And YES headaches can be from WG . Good grief. I have suffered horrible headaches many times over the years. No good doc would dismiss that WITHOUT talking it through with you and TRYING to determine the cause. It is one thing to make a mistake about symptoms (that happens to the best and I never blame doc if they are at least taking them seriously and trying) but to be so dismissive and treat you so harsh when you are sick (doesn't matter from what) is just unconscionable.
    I'm glad to hear that it sounds like you are the track of someone better able to deal with WG. Your doc might be a good guy, might be a good doc, but it doesn't sound to me like he is a good WG doc.
    I wish you speedy relief and a quick course correction. Kirk
    PS As a long time WG patient I keep antibiotics on hand just for those weekend binds or other delays in getting meds. I went on a trip to China once and my doc loaded me up with meds that I could treat myself with in case I got in trouble. Lots of prednisone (which I unfortunatly ended up needing) and antibiotics (which I didn't need). To this day I keep a box of large amounts of spare anything I might want to take. It gets used fairly frequently.

  3. #13
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    Marta, so glad you are moving on to another doctor, the symtoms you mentioned sound like a wegs flare to me. I had very bad headache before diagnosis and even had a ton on MRI because of it. Take this chance to find the right doctor, and please get in soon. You are a strong person and we will all help you get through this. Don't ever give up!

  4. #14
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    I can only agree with the others posting here - terrible treatment and you must find someone else as soon as possible. I don't know where he is coming from with the idea that head aches are not a Wegener's symptom. Crippling head aches were my first symptom!

    By the way, I've always had the flu shots as posted previously and never had any reaction. This year's did not even leave a bruised feeling.
    Jack

  5. #15
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    Marta he s a @@@@@@ headache like Jack one of my first symptoms to; just about to have flu jab i was fine last year and hubby was a bit off for a few days
    just had the cinversation about him having it again this year although his will have to wait hes just had man cold
    i hope you get sorted out soon please take care of you DEEx

  6. #16
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    Hugs Marta.

    I know doctors are highly trained but they should be taught how to respond to patients concerns. Instead of dismissing you like that. I would be upset too. You're not a child.

    Malin i want your Rheumy. lol.

    Look for that special doctor who will look after you,

    Good luck

    x x x

  7. #17
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    Me2, make sure to check the expiration dates on your antibiotics. Expired Tetracyclines can cause the condition I have-- elevated intracranial pressure (pseudotumor cerebri). You definitely don't want that! Other expired antibiotics or other drugs can cause major troubles.

    Malin, a doc who overreacts can be just as dangerous as one who underreacts. Overtreatment is a big problem with Wegs. I still recommend you find a Wegs specialist to guide your care.

    One note about vaccines... They can cause immediate reactions, for sure. But they can also cause reactions that wouldn't be obviously linked to them. For example many of the ingredients are carcinogens. That wouldn't cause cancer immediately. Also, the same ingredients are known to disrupt the immune system. That could take months or even years to show up. I believe the huge number of vaccinations I got in the Peace Corps contributed to my developing Wegs. My immune system was never as robust after that, even though Wegs didn't show up for 17 years. Many autoimmune diseases take that long to develop. I think I staved it off for so long because I was doing so much to strengthen my body. Just throwing that out there, because many people think if they don't have an obvious, immediate reaction to a shot that everything is fine.

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    I do have to say that if Malin's rheumy is seeing her every time that she has a bad cold, and not doing something like upping her pred or immunosuppressant, that's not a problem in my view. A doc has to allow for a WG patient's inclination to underreport symptoms, especially if they may be in denial about having a flare, and, well, better safe that sorry.

  9. #19
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    My concern is about the doc overtreating and also that Malin is in the position of guiding care. Wegs comes in many shades of grey and she could dismiss symptoms. We are also quite good at denial--every one of us!

  10. #20
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    Hi Marta, I was appalled by the action of that rheumy it what totally not called for, goodness me you had all those symptoms. as you say thing somtimes happen for a reason, althrough you didn't want to start feeling this unwell to find out. I hope it all goes well in search for a new rheumy
    I know you will keep us posted, when you mentioned your esr, that brought me back to what my rheumy said to me the other week, my esr54 and crp 52 and he said ah well they are always high. Marta i hope this message finds you feeling a lot better don't waste another thought on horrid man.

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