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Thread: Now I'm getting angry

  1. #51
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    Quote Originally Posted by PJ2010 View Post
    Do others on this forum suffer the same incompetence in their treatment?
    No, I have a fantastic team of docs that work very hard with me and for me to try to keep this stupid disease at bay.

    Sorry to hear that you're not having a good experience. Shop around for docs, it will be worth it in the long run.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  2. #52
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    Don't have that problem on top of the existing ones. You're right...there should be a more holistic approach, but modern medicine, though it's leaning that way, doesn't seem to be able to adjust to that train of thought easily. Some clinics/research hospitals, etc. do it quite well, but it's expensive and so on...I'm sure some peeps' insurance companies have reminded them of that. And, then, to put your own team together, not fun or easily done. Doing it that way cost a dear friend his life. Hope you can find some more docs or learned enough on here about them that you can move on to some one who will provide what you need. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #53
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    Hi there all. Sorry for being such a stranger, just been busy.

    After a long waited six months between blood tests and a visit to the specialist I finally got to see the dr again. You won't believe this, the dr I got was the same one I saw last time and all he said was that all my blood tests were good. He said I had a slightly high ANCA level which is normal for anyone with Wg.

    This is the same dr that questioned whether I even had Wegener's at the last visit.

    I told him I have not been feeling well. A few times a week I feel so unwell I feel I need to be in hospital but I can't pinpoint why. He didn't even bother to check my blood pressure. I was in and out within 5 minutes. Again I put in a complaint to the hospital.

    When I got home I had a closer look at the blood test results he gave me. He was right, most of the results were within the normal range. But, the MPO-ANCA was greater than 8.0 AI when the norm is less than 1.0. The comment from the pathology was that it is a VERY HIGH POSITIVE.

    Can anyone give me some advise?

    I understand that a level greater than 4.0 may indicate a change in disease activity. This, along with other physical symptoms I thought should be looked at more closely.

    I feel generally unwell most of the time, night sweats are normal for me, my eyes hurt especially as the day progresses, my body aches most of the time, still have unusual discharge from my nose, my hearing is not good, I have lost all sense of taste and smell (long ago) and my sleep patterns since having this disease are crap.

    Last week I went to see a new GP. I showed him these results. As a normal dr he professes he doesn't know much about the disease but he said he would read up on it. He has since sent me for more blood tests, a chest X-ray and also found my blood pressure quite high. He is now sending me for a ct scan as the chest X-ray has shown up a possibility of lung damage due to Wegener's.

    Oh, I forgot to mention the persistent cough I've had since my dx.

    Im thinking that with this general Drs interest and help maybe I might get looked at more closely by the specialists.

    Maybe be they think 'oh well, he is 61' ???????

  4. #54
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    Quote Originally Posted by PJ2010 View Post
    Last week I went to see a new GP. I showed him these results. As a normal dr he professes he doesn't know much about the disease but he said he would read up on it. He has since sent me for more blood tests, a chest X-ray and also found my blood pressure quite high. He is now sending me for a ct scan as the chest X-ray has shown up a possibility of lung damage due to Wegener's.
    I read the first part of your post and was wondering how many times people get ignored by doctors, seems almost the norm if you read the posts here. And the flip of that question, does anyone get a good doctor? OK, there's a lot of that also.

    Sounds like the GP is on your side and may do well. Sounds like you've got a good understanding as well. I would give him the chance to help and push for specialist help all those issues.

    With the AI, I thought it's YOUR number which counts, you're looking for it to be stable from test to test whatever the number is. I could easily be thinking backwards.

    Gary

  5. #55
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    If I were you I would go to the e.r. They can contact someone that is knowledgeable with wg as a consult. There are a lot of Aussies on here that I am sure they can lead you to a good dr. The longer you wait with no meds...the worse it gets.
    Life isn't about how you survive the storm, but how to dance in the rain !

  6. #56
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    Generally symptoms outweigh lab results when assessing activity of Wegs and need for treatment. The Weg experts know this and place great weight on how you feel and what symptoms of active Wegs you might have that suggest Wegs activity and need for more intensive treatment.
    Knowledge is power! Wisdom is using it to make good decisions!

  7. #57
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    Thank you all for the feedback.
    Is it normal to feel unwell all the time. It comes and goes on a daily basis.
    Do you guys actually feel unwell? Or just when flaring?

  8. #58
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    Quote Originally Posted by PJ2010 View Post
    Is it normal to feel unwell all the time.
    Do you guys actually feel unwell?
    Or just when flaring?
    Answering for myself, yes, yes, no.

    I'm on disability and in a wheelchair due to fatigue, it's so bad that most days I can't even drive before noon. Gain energy as the day progresses. I get a few hours a day where I can be on my feet enough to wash the dishes but even that is never before 3pm. Five minutes to wash dishes requires half an hour of recuperation laying down flat on my back. It took me three days to mow the very small back yard (33' x 17'). I've only managed to do that four times since April. Does that make you feel better about your situation?

    Wegeners is unforgiving, it's relentless, it's sneaky too...

    DON'T LET IT GET OUT OF CONTROL!

    Go kick some doctors in the ass to get quality health care. Seriously dood!!!

    Good luck.

  9. #59
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    I am truely sad you are so unwell. I wish I could be there to help you.
    I still work in my own business as a car mechanic. I have a guy that comes in to help when I need it.
    Life seems to be extra hard on some people.
    Thank you for your advise. Unfortunately the medical system seems to be hinged on people making big money at others expenses.
    My heart for you my friend.

  10. #60
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    How you feel depends a lot on the meds you take and the amount of damage done by the Wegs to your body. High dosages of pred can make you feel quite good for it is can mislead you into thinking you have lot of energy but your body can't deliver and carry out your ambitious plans and you often crash very hard.

    If you have lung damage and kidney damage like many of us, feelings of fatigue will be much worse than with the normal fatigue Wegs tend to create in most Weggies. Level of pain in joints also relates to dosage of Pred and degree of remission from Weg activity. Fatigue is probably the number one complaint and problem. Some people seem to do amazingly well though after Wegs in doing strenuous things but most of us seem to require more rest and a down sizing in life style.
    Knowledge is power! Wisdom is using it to make good decisions!

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