HEY LONG TIME... MORE INFO

Discussion in 'Fibromyalgia Main Forum' started by Peacelearning, May 26, 2006.

  1. Peacelearning

    Peacelearning New Member

    Hello everyone!
    I wanted to write as I have more information about my case, and I think it MIGHT help some of you???

    I recently had my immune system checked. I have hypogammaglobulinemia. It IS NOT genetic. Looking back I found that my IgG has dropped amost 200 into abnormally low, and I have rare low IgM. Also, as I have mentioned I eat a very healthy diet! In the last year I have developed metabolic syndrome. Though my blood sugars are fine, I am not metabolising my lipids. (Not good, not pretty). This can be related to that enlarged liver and thus bleeding problems. The CFS and FMS are infact SECONDARY to something gone astray on a cellular level. We're getting there.

    hypogammaglobulinemia can be related to types of lymphomas or multiple myelomas that can "smolder" for years causeing a person to feel pain and fatigue. Treated early (and tests start with looking at the immune system) these cancers can be "managed".

    My endro doctor said that "Naming the Demon" was essential to my emotional and spiritual strength and wellbeing. If you know what you got, you can address it and not be so victimized by it. For over 18 months, I have not had a name... CFS and FMS have always been thought to be secondary due to inflammation markers that come and go and tansient neuralgias, chronic low grade fever, brain and now organ envovlement. (Pee is not in Utah -- protein chains being tested)

    SO... ALL THIS TO SAY...
    While I know FMS and CFS are REAL they can be initial signs of smoldering illness that should not be ignored.

    Still peaceful...
    May end up going to Mayo???

    Sincerely.
    PeaceLearning
  2. Peacelearning

    Peacelearning New Member

    my own self...
    Would love to hear from some of you.
  3. LittleBluestem

    LittleBluestem New Member

    Something else that might be wrong with me?

    Seriously, thank-you for sharing this information. It could be helpful to others. Keep us posted on your treatment and progress.
  4. Peacelearning

    Peacelearning New Member

    Hi again...
    Still waiting on that UA. Was told I will have it first thing tomorrow morning.

    Seriously, I think it is wise for some of you to check on your immune system! I was reading a while ago that one woman always had high lymphocytes. Others have anemia... this is all related to markable immune declines. (And futhermore, many times treatable!)

    PEACE
  5. Peacelearning

    Peacelearning New Member

    Poor me, nobody writes me. So, I will write again and give more updates...

    OUCHIE! I hurt all-over-my-body. I am so tired, I lay down for a little nap, and 4 or 5 hours later wake not knowing what time or date it is. Joint pain, foot pain, muscle pain, neuropothies (buzzing in my hip or wrist, bee stinging on my toes, etc.,) And now ... swollen lymph nodes.

    So, I ask my Internist to please order a look at my T cells and B cells in light of my falling immune system. She thumbs through her book and says, "I don't even know what to call this test." She orders it... And in a nice way, calls me "doctor" due to research and level of questions.

    Venting...

    Even though I do not hear this "Doctor" comment as negative, I still do not like it at all, and I think I was successful communicating this to her in my body language, facial expression with a nonverbal prehistoric grunt.

    I am not flattered.

    Are my expectations unrealistic that SHE do the research and SHE ask the questions along with me? After all SHE IS the real doctor in this picture! The comment seems to be an attempt to defuse the very possible fact that my case is beyond her scope of practice.

    SO... I said, please refer me if you can't get me diagnosed. I started this "please consider refering me" process 5 months ago, including sending her a complete history of the onset and progression of my symptoms to help her -- noting that in the last 15 months my WBC has doubled and my immunogobulins are decreasing, and CH50 remains high. Then again, I asked... And now again, in writing and verbally.

    She said, "I am humbled, as I have never referred one of my patients to another Internist." I appreciate her honesty, but guess what? It's not about her.

    Due to bleeding problems during the failed lymph node biopsy, I suggested she seek out a hematology consult... I asked that we look at the health of the platelets. Nothing.

    Anyway ... after yet another long visit with copious dictation -- she asking the same questions ...
    Fever? Yes.
    Night sweats? Yes -- I sweat all the time.
    Joint and bone pain? Yes...

    She suggested immunogobulins to boost my immune system. I said, NO! I want to know WHY my immune system is failing. Please consider ordering a look at the B and T cells. She ordered them.

    Well, results came back. High T cell counts.

    I obtained the results before she did. I called first thing on Monday morning and asked for a return phone call that day. Additionally I wrote an email. Nothing. I called at 5 minutes before closing and on the message machine, I asked, "Was the email received?" The next morning I get an email for the office manager that said, "I gave the communication to the doctor, I am sure she will get back to you as soon as she can. My email request included additional research and professional protocol for further recommended testing which may include a bone marrow and liver biopsy. (In previous post I explain liver enlargement in the last year as well.)

    Additionally, I AGAIN asked that we please address the bleeding issue before any invasive testing is done. In writing I asked that I be admitted into a University Hospital for diagnostic stay so that all tests can be done in one swoop and I can have a firm diagnosis. So far ... nothing from her office.

    I can't "divorce" her. I have too much time invested and she is the most familiar with my case. I understand the medical field... I understand it can move slower than a slug. I understand that she may be dealing with a case load that is overwhelming to her at present. I understand that I fall between the cracks due to systemic presentations. I understand, I understand, I understand!

    I understand that I am frustrated. I understand that while it is best for all of us to he "our own best advocate" there MUST be a doc on the other end not only listening and believing (as I do believe my doc has) but also DOING. (There is little evidence of this so far.)

    IF (and I emphasize IF) I have a form of chronic leukemia or lymphoma, I want as much time as possible to consider what I want to do, if anything... I want to prayerfully consider options. So, for me, time is of the essence. But... to her? Well, I am not on my death bed.

    I hobble around, get the bed made, clean the kitchen and thanks to those self cleaning toilet tablets in the tank, bathroom cleaning is made a little easier...

    Have fallen between the cracks here too? Do I need to be on my death bed to get the help I need? Do labs have to be "out of this world" before a doctor moves? Don't I, as a simple human being, deserve a phone call, at least telling me, "I have reviewed these labs, I have read your email, and I am considering this or that, and I will get back to you at so and so time?"

    I think so. I know so. It is a matter of professional and human curtesy.

    SO.... all this to communicate to this forum. IF I was not doing my own research, and IF I was not a nurse, understand the medical shortcomings, and IF I did not know how to navigate the system or be my own advocate, I ask ... where would I be? Whare are some of you?

    Would I spend my days posting on the FMS/CFS site taking ever increasing doses of narcotics, juicing, making shakes,trying to exercise... venting, begging in email for an empathetic ear from invisible people, typing in tears: "I can't get out of bed, I hurt everywhere, I am so tired..." Maybe. And maybe that would be the true and only reality. BUT maybe not! And for this reason I want to encourage each and every one of you!

    FMS and CFS is a diagnosis AFTER all other things have been exhausted. And if symptoms increase (as they have with me) then possibly, it is secondary, in which case you must be "a thorn in the side" of the medical profession.

    Here is a hint! I have learned to "write it down"... Write your concerns and questions on paper, and if you have done research, it must be reputable and short (list references) And don't let your note be more than a paragraph or two. Make a copy for yourself, date it, and ask that a copy be placed in your chart. That makes it a legal document. And sadly, in this day and age, that may be the only thing that moves a doctor BEFORE you are "on your death bed".

    Sincerely,
    STILL (believe it, oddly it's true) Peaceful...
    Peacelearning
  6. Marta608

    Marta608 Member

    I'm always "glad" to see another diagnosis besides CFS or FM. I get concerned that those categories are becoming catch-alls.

    Good luck with this. Let us know, OK?

    Marta