Hey, why don't anyone write me?

Discussion in 'Fibromyalgia Main Forum' started by Peacelearning, Jun 14, 2006.

  1. Peacelearning

    Peacelearning New Member

    Hey, why don't you write? 06/14/06 08:25 AM

    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.


    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".

    STILL (believe it, oddly it's true) Peaceful...
  2. Marta608

    Marta608 Member

    I was only able to get through about 1/4 of your post because of the length and didn't find a question to respond to so far. Sorry..... it's not just you; I have trouble with any long post. I'll get back to you after I have a nap.

  3. victoria

    victoria New Member

    Lots of all of our posts can go unanswered or not get many responses -

    one reason is that this board moves soo fast -

    another is (while you did do a lot of paragraphing), it is hard to read long posts --

    and another reason is many don't make their titles clear enough about what they're posting about.

    I would really recommend you go to the Lyme forum here (click on 'messageboads' up above) AND go to ilads.org which has the motherlode of information about Lyme.

    Your fever, aching joints, are indicative of Lyme and night sweats are indicative of babeosis, common co-infections. You might want to find the information on these chronic illnesses and take it to your doctor.

    At least she sounds open to considering some alternatives. . . she may also be open to giving you a trial on abx since she may see that you fit the clinical picture.

    Just be sure to say you want the Western Blot for the Lyme.

    hope this helps... unfortunately all too often we ARE in the position of educating our doctors. I'm at the point where I dont mind because it used to be that they would take offense if you asked any questions that indicated you'd been reading anything - the old "God Complex". It is slowly fading away, it seems.

    all the best,

  4. NyroFan

    NyroFan New Member


    Good for you! Play doctor all you want.
    I run a few ideas to my doc once in a while. He is pretty flexible.

  5. UnicornK

    UnicornK New Member

    These are all good ideas. I'd like to add one more.

    Fill out your profile. Perhaps even add a picture. We never try to exclude anyone...we all need the support, companionship, etc. But when there is a profile filled out, we feel that we know the person a little better. It doesn't have to be much. Just a little bit so we can get to know each other.

    I am sorry that you feel we are ignoring you. It is not intentional.

    God Bless.
  6. baanders

    baanders New Member

    It could be neuritis or neuromas...very common foot conditions. See your podiatrist for a diagnosis. I suffered with neuritis (both due to wearing high heals, poorly fitted or tight shoes or flat feet)and the only cure was a laser, called the Microlite (or Microlight Laser). Look it up on the internet so you can buy one from Mike Barbour or see a dr. You may also need orthotics to put your feet in the correct position. Unless the foot position is treated, the nerve pain won't go away. Neuritis and neuromas can make fibro pain worse and the fibro amplifies the nerve pain. Don't ignore this.

  7. dleaning

    dleaning New Member

    Sorry, I have never seen your posts before. I like to answer alot to give support. Yes, sometimes I don't get responses, and I am a sensitive person and I know how you feel. THis is one of my problems that I try to not take personally. I really like this board and it is very helpful, and I do try to remember that there is soooo many posts and some do get overlooked.

    DOn't take it personally. I will look for your posts more now.

    Hang in there OK???

  8. Jordane

    Jordane New Member

    You have not been ignored, intentionally. Just takes me time to get here.

    I also have trouble with long posts.My head cant hold it all at once.

    But,it is awfull that you have to fight and claw your way thru the medical system.You are getting thru,or so it seems.

    Do not give up!!! Your health is important,and you want to know the results so you can plan from there!!Keep asking, be there in their face so they dont forget!!

    Take Care!!

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