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Thread: Recapitualtion

  1. #101
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    My friends, you know how much I would like to stay and chat with you all. But I am off no for a couple of weeks with limited or no internet access. I am taking with me a some books my daughter gave my for Father's Day: Gift of the Crow, which I commented on before; The Raven's Gift, a remarkable story of healing, and Zoobiquity, which appears to be a great read for Weggies, who seem to be rather interested in all things medical, and nearly all things about the animal world.

    Have a great time, everyone. Enjoy Sangye's cookies and such. And by all means, LISTEN TO HER! See you soon....

    Al

  2. #102
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    Quote Originally Posted by Al View Post
    If I have a larger point, it would be, I think, that delayed diagnoses--whatever the reason for them--threaten major organs and, perhaps, life itself. I understand the desire to look for simple, prosaic answers first. But this is not always where the solutions lie. By the time this becomes apparent, lungs and kidneys, for instance can be in serious trouble. Yet the system is not set up for rapid diagnosis. There are many reasons for this. I hope to get a major dialog going about the what-to-do-about-that of it all. I'll start: At the end of each and every day, the doctor goes home, to his or her own family, has a drink or two, and, perhaps, falls asleep in front of the television. The next time he or she thinks about your ailment is at your next appointment. For you on the other hand, it is pretty much constantly on your mind--at least in the back of it. Therefore, it behooves you, the patient, to take the lead in de-coding the "dots". In my case, I felt strongly that I had a systemic inflammatory disease, even though I had no vocabulary for it; nor could I, then, discuss a hypothetical etiology and pathogenesis for it. I had to keep blasting through the tendency for the medicos to ignore the history.

    I think there is more to this story; your turn!

    Al

    Al

    I think this quote summarizes well my new philosophy since Wegs almost got me. I no longer settle for or accept response that tells me what my symptom isn't, I want to know was it is and what is causing it and how it should be treated. One of my symptoms I developed from the Wegs damage after many months was gynecomastia. It was causing me some discomfort and mild pain and I wanted to know what it was so I saw several different doctors at different clinics and received some reassurance that it was not breast cancer or lymphoma, but no explanation as to the cause or recommended treatment. I decided this was not good enough and didn't want to end up with another serious problem from delayed diagnosis so i search for a doctor who had a more experience and willingness to work harder to answer my question as to why I had developed it and what to do about it. The fourth doctor seemed willing to take on this challenge and had the back ground info from the first three doctors and put it all together to give me a clear answer and recommendation. The Cytoxan IV treatment had caused swelling in my testicles which damage them and reduced my testosterone level and then the imbalance between the estrogen and testosterone caused the gynecomastia. The testosterone levels did not appear to be dropping anymore and had probably stabilized so trying to correct this was likely to have more risks than benefit. I was also advised to continue to have regular follow up to evaluated for the the two cancers I did not have. I then felt satisfied and happy with this info. I figured out the key to getting the right answer is to ask the right question to the right person at the right time. Sometimes you need to find a person who is more knowledgeable with more skill and/or one who is more motivated to work a little harder for you. This can be a real challenge in today's health care environment but the right person will enjoy the challenge your symptoms present and rise to the occasion.
    Last edited by drz; 06-21-2012 at 09:47 AM.

  3. #103
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    I may have suggested this in one form or another on here, not sure. Let's put together a 'symptoms' list w/descriptors/explanations on here. Compile, edit, and post, first of all, on this site as a direct link for all others to access. Then, if it seems to work, send it out to as many clinics/docs as we can recommend/access/find. Just an idea...it seems many times the first question a new and scared Weggie has is 'what the hell is going on?' If there was something compiled on here from our 'experiential' standpoints, maybe that could help somewhat. I find all the 'bookish' explanations are, while accurate, without heart and personal attachments...just a thought.

  4. #104
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    I think this is a good idea Don. Even though doctors try to remain objective most get emotionally involved with their patients. That is just the human way. I think the BVAS is a good way to figure out if you have a Vasculitide though.
    Phil Berggren, dx 2003

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    Al, enjoy your vacation! Those books sound interesting, especially "Zoobiquity." I'm hoping my library has it on Kindle.

  6. #106
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    Quote Originally Posted by Sangye View Post
    Al, enjoy your vacation! Those books sound interesting, especially "Zoobiquity." I'm hoping my library has it on Kindle.
    I'm back--deal with it, folks.

    I've read all the books on my summer reading list. It will take some time to wade through all the posts since I left (along with coming to terms with Reality), but I will post a review when I can. Zoobiquity turned out indeed to be quite fascinating....

    Al

  7. #107
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    Quote Originally Posted by Al View Post
    I'm back--deal with it, folks.

    I've read all the books on my summer reading list. It will take some time to wade through all the posts since I left (along with coming to terms with Reality), but I will post a review when I can. Zoobiquity turned out indeed to be quite fascinating....

    Al
    I'm glad you are back, Al! When you have time, we'd like to hear something about Bird Camp. BTW, we are now looking at puffin and osprey nests.
    Anne, dx'ed April 2011

  8. #108
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    Quote Originally Posted by annekat View Post
    I'm glad you are back, Al! When you have time, we'd like to hear something about Bird Camp. BTW, we are now looking at puffin and osprey nests.
    I will, Anne--as soon as I recover from vacating....

    Al

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