Tuesday, October 4, 2011

A Really Big Question

I had some labs drawn a few weeks back and my doctor's nurse called me with the results late last week. My vitamin D is low and I need more thyroid medication, however those were the least of my concerns because my C-Reactive Protein came back high. Normal range is 3-8 and I am 18.7. I knew it was a test for inflammation but didn't know much more than that. The nurse informed me because my CRP was the same as it was in April, the last time they checked, my doctor considered it stable and was not concerned. "What?" I asked, unsure I heard her right. "So what was my sedrate?" I inquired. Ah but that test, another marker of general inflammation, had not been run. "Did she check my ANA?" I questioned, wanting to be sure Lupus or another autoimmune disorder had not cropped up in the years Fibromyalgia had consumed my life. "How about my white blood cell count, has that ever gone back down after the strokes?" I kept on. I think I lost the nurse at this point because she stopped answering me and started talking notes to give to the doctor.

I had my CRP checked years ago at The Fibro & Fatigue Centers and it was elevated, but I could barely walk across the room back then and was in so much pain surely I knew I was inflamed. Today I did a little research, eternally thankful for my friend named google. Oh wow I am not sure if I loved or hated what I saw! The CRP test is used to confirm general inflammation and assess the possible presence of: cancer, connective tissue disease, heart attack, infection, atherosclerosis, inflammatory bowel disease, lupus, RA, strokes, polymalgia rheumatica, vasculitius and giant cell arteritis, to name a few. When I read the definition of polymalgia rheumatica I almost fell out of my chair, for I will be darned if everything but the weight-loss and being over 50 did not describe me to a T. Then the link to giant cell arteritis and vasculitis made my blood run cold, for vasculitis was the cause of my strokes.

Then I got really really really angry. I felt like I was back at square one with doctors not taking me seriously because I am young, proactive and look healthy. I am so pissed at my doctor for thinking this is just something to be ignored. For most polymalgia rheumatica may occur in patients over 50 but strokes don't usually happen to 33 year-olds either, so I think I have earned myself some "out of the box" problem-solving medical care by now. I see my doctor in 3 weeks. I am going to compile all my lab records from 2005-now, including records from the multiple hospitalizations due to various life-threatening ailments, and research as much as I can. And I am going to go in there and let her know how disappointed I am by her lack of investigating something that could be linked to the strokes that almost killed me last year. I will request a referral to a Rheumatologist, too. For if I don't do these things all I can do is sit here feeling like a ticking time bomb with a blindfold over my eyes, just waiting for the next health crisis to explode and take my life.

Thanks for joining,


  1. oh Leah, that is terribly wrong. A big part of my frustration is with medical professionals not doing their job properly, being dismissive, and not being responsible in their level of care.

    I hope your doc listens to you and apologizes. This is unacceptable. Here's hoping you get somewhere (or else can find another doc that will take you seriously- finally).


  2. I am so very sorry that you are dealing with this. I honestly know what you are going through, and I'm a health care professional. They STILL don't listen to me.
    *gentle hugs* and keep us posted.

  3. I'm so sorry that you're going through all of this with your doctors. They should have asked for all of your medical records before running tests. Try to find another doctor that comes highly recommended from fibro patients.
    http://www.patientslikeme.com -- This site may or may not help you.

  4. HELLO I just came across your blog sight,i am a 59 y/o female and have had fibro for probably 30 years now. but did not get the official diagnosis till 20 years ago.. what interested me was that you have had problems with pancratitis i also have had many bouts of it over many years now. so i am now interested to see if all the things that play into fibro triggers the pancreas .i am a registered nurse retired /disabled now for 10 years. so i get how upset you are with health care. you do really need to see rheumatologist that deals primarily with fibro if possible. i use to see one but stopped years ago because i am able to work so close with my regular M.D. for all of the other chronic illness'that also have on top of fibro. i have 2 daughters in your age that also have fibro. so i send you lots of luck and prayer's for getting some answers. take gentle care, thanks peggy w.