My Blood Just Might Be Slightly More Interesting Than Yours

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Vast knowledge makes you strong.  A little knowledge is a dangerous thing.  My dad used to say that last bit.  And it follows that if you believe something, it is very real in its consequences.  So if I believe my left foot is possessed by satan I might be inclined to cut it off.  Even though my original notion was probably wrong, I still end up hopping about on one foot.

I’m sure there’s a miraculous point in there somewhere, although it could be simply a tangent my brain took off on when I remembered my great love of medical dictionaries and encyclopedias in my youth.  Those books have been replaced by Google.  I had a mothers medical book when my kids were small and was able to diagnose them with every childhood affliction going.  Now there are millions of new conditions so I have great empathy for todays parents and their boggled minds.

I still research diseases and random symptoms and come to wild conclusions.  Then I go to a real doctor to be assured that I am not in immediate danger of dropping dead.  So far they have all been very accommodating.

The condensed version of my medical history is just as likely to lull you in to a coma as the detailed one, so I will skip over both of them and jump right to the diagnosis.  IgG4.

Yes, of course, I could not have something mundane and ordinary.  IgG4 is a rare systemic fibro-inflammatory disorder.  Here is what I know about it, even though I have googled these facts and realize you are not supposed to blindly believe everything you google.  Hasn’t stopped me yet.

Immunoglobulin G is an antibody found in blood and extracellular fluid which controls infection of body tissues.

By binding many kinds of pathogens such as viruses, bacteria, and fungi, IgG protects the body from infection, neutralizes toxins and helps maintain food tolerance by the immune system.

Inflammation is a result of infection.  

Okay.  The original specialist I saw no doubt said all this to me because he wrote it all in a report which I didn’t see until very recently.  Two years later.  All I heard was NOT CANCER blah blah blah.  He said he didn’t know the cause of the infection or the inflammation, gave me heavy-duty antibiotics and then a course of prednisone, and since neither made any difference suggested we forget about it.

The inflammation never went away so my doctor and I thought a follow-up visit in a little over a year would be a good idea.  Same clinic, different doctor, and it’s like he never read my file and started over again with all the same tests.  Eventually he didn’t know what to do with me next and referred me to a lung specialist.  I learned more in that one visit to them than I figured out from him in six months.  They are the ones who showed me the original doctors report.  They sent me for blood tests and then referred me to a hematologist.  I saw her on the 3rd of August and she was wonderful, even though she sent me to a lab to have seven more vials of blood taken so they can analyze the hell out of it.

Her diagnosis, unless she finds anything new, IgG4.  Treatment for now – none.  Steroids could cause more problems than they solve so no point in going that route yet.

The inflammation hasn’t spread much except to a lymph node behind my esophagus and a couple in my lungs.  Any organ in the body could be affected.  It seems to be a little unpredictable.  Fibrosis is a possibility.  Not a lot of studies have been done on this yet and there are differing opinions. But really, I am done losing sleep over it.  Skin rashes and thyroid problems and type 2 diabetes are all related and I remember saying once I thought whatever was going on was a systemic thing and holy crap, I was right.  Maybe everything is systemic, I don’t care, I still think I’m smart.

On Wednesday I’m going to see a dermatologist on the hematologists recommendation.  Then I would like to do what the original specialist suggested and forget about it.

How’s that for a plan.

 

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21 thoughts on “My Blood Just Might Be Slightly More Interesting Than Yours

  1. Gah! Aging bodies! Gah! The Cdn Health system! Wait and wait and wait for a scant 10 minutes with one doctor, 5 minutes with another 6 months or more later. I’m still trying to get a real diagnosis and treatment for my hip. Good luck Lin. Hope you at least can manage it.
    Alison

    Liked by 2 people

    • Yes I hope so too. I’ve been feeling a little guilty actually about milking the system with all the testing and retesting and running around from doctor to doctor. There is probably a gold star on my record for hypochondria….😄. Good luck with your hip! Yes this aging thing can be a royal pain.

      Liked by 1 person

  2. I suppose it’s good to have a name to place on the issue. Seems to make one tend not to believe they are simply crazy or a hypochondriac. Good thoughts as you head forward with all this, even though forward really means holding your own and just living life. That can’t be too bad 🙂

    Liked by 1 person

    • I am feeling pretty good, all things considered. I’ve SO missed reading your blog. There are days and days when I just can’t find the time or the energy for WordPress and I just clear my email. Wow, can’t believe I just admitted that!!! lol. Getting my priorities sorted and will try to do better. And stop using the word “just” so much. 😄

      Liked by 1 person

  3. I so relate to your research and random conclusions paragraph! Funny and painful. I keep reading that the body is designed to heal — so there’s that. Do any of the doctors talk about any foods being helpful or not helpful in easing inflammation?

    Liked by 1 person

    • They don’t really, although I’ve brought the subject up enough times. I truly believe we fill our bodies with toxins by what we eat and breathe in more from the polluted air. Maybe I should see a naturopath. Watching my blood sugar has certainly made me more aware of what I eat and drink. And I take turmeric, supposedly an anti inflammatory.

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      • I agree… what we fill our bodies with has to make a difference. Might not be all there is to it, but must be a strong factor in taming inflammation.
        I’ve read that about turmeric. May it all help!

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