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MGUS or Multiple Myeloma or ?...Need help!

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  • MGUS or Multiple Myeloma or ?...Need help!

    I started PB in August 2010. I have felt lousy most of my life and no doctor could give me any real answers-just presciptions-imagine that. The PB way of eating and living has made huge improvements in my health and well-being. I will be primal the rest of my life.

    Here is the real problem though...in July, my bloodtest showed elevated protein levels-11.0 g/dl and my doctor ran tests again in August-same levels-10.9 g/dl. I put her off until December because I was making such big changes in my diet. I retested in December 2010 and the levels were higher-12.6 g/dl. She did more tests-Protein electrophoresis and immunofixation, serum-results IGG Kappa monoclonal band present, 5.34 g/dl gamma spike. She sent me to a hemotologist/oncologist who is running more tests - among them a full body bone xray and maybe a bone marrow biopsy.

    I have done some research on the internet and found some studies showing Celiacs have these same bands and it is proposed that multiple myeloma is the end result of untreated celiac disease. I believe I have been gluten intolerant my whole life, but it was never bad enough to be recognized for what it was. I wouldn't test positive now because I haven't knowingly eaten any gluten for months.

    I guess I am starting this thread for somewhat selfish reasons...I need help fighting CW because I believe I will at least maintain my levels and maybe even lower them if I keep doing what I am doing. I know have high inflammatory levels. My primary doctor also ran a SED rate by modified Westergren, manual and it was 105...normal is 30 or less. I cut out all dairy and only use nuts lightly since 1-10-11 and feel much better - again. I feel like I am convalescing from a long illness. I am sleeping better and getting more exercise...trying to lower my stress. All of this will take time and practice.

    How do I find a more "Primal", less CW cancer doctor for a second opinion and help if this doctor won't listen? Thanks...

  • #2
    I am glad you are feeling better with this WOE. However, I don't think it is wise to hold-off on the follow up for this. Even though you are reducing inflammation, if you already have a cancer, reducing inflammation is unlikely to be adequate to put it in remission.

    Your doctor can't make you do anything, but if it were me, I would finish the work-up to rule out a malignancy. If there is no cancer, then I would continue allowing your body to heal itself for a while and see how things go.
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

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    • #3
      Primal doctor - is there such a person?

      Thank you for your input! I have another visit this Wednesday to evaluate the x-rays, additional blood tests, etc. I may or may not need the bone marrow biopsy and will find that out Wednesday. I won't avoid what I may have to do next, but I want to make sure I find a doctor who won't undo what I have done. It seems to me that getting them to listen to you as a "whole individual package" and not a statistic is the hardest part of any treatment. I don't want them shooting bullets at the results of my problem and not considering the cause. I live near Portland, OR. I am not sure how to research doctors and their outlook. Is there a way to do that?

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      • #4
        Myeloma Update

        I found a book that is really helpful for researching doctors in my area. I have Multiple Myeloma-my doctor says he thinks Stage 2, but all the test results are not yet in (had to have the bone marrow biopsy done-ouch!) and I don't have many of the physical symptoms for that stage-some bone lesions, but very little pain. I will found out more on Wednesday. I would like to know if anyone else on this forum is fighting this battle and what is helping...Thanks

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        • #5
          Monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) are asymptomatic, pre-malignant disorders characterized by monoclonal plasma cell proliferation in the bone marrow and absence of end-organ damage. Recent advances in the pathogenesis, natural history, and prognosis of MGUS and SMM are reviewed. A new risk stratification system to determine the prognosis of MGUS using the size and type of M protein, and the serum free light chain assay is discussed... Diagnosed of Relapsed Multiple Myeloma
          Last edited by jennyF; 03-21-2014, 05:52 AM.
          sigpic
          Jenny Fierce
          www.myelomacrowd.org

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          • #6
            Originally posted by jennyF View Post
            Monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) are asymptomatic, pre-malignant disorders characterized by monoclonal plasma cell proliferation in the bone marrow and absence of end-organ damage. Recent advances in the pathogenesis, natural history, and prognosis of MGUS and SMM are reviewed. A new risk stratification system to determine the prognosis of MGUS using the size and type of M protein, and the serum free light chain assay is discussed...
            Agree with you .. This is cool source!

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