Thursday, October 23, 2014

Mystery Diagnosis (aka What the Heck is Wrong with Me??)

Wow where to start with this one?  For the last year or so, basically since Fletcher was born, I've been dealing with an increasing number of seemingly random health complaints.  I've seen 4 neurologists in two states, 2 primary care physicians, 1 gynecologist, 1 rheumatologist, 2 physical therapists, 1 optometrist (love you KR) 1 chiropractor and 1 myofascial release massage therapist.  1 had 2 MRIs, 3 EMG/NCV where they stick needles into your muscles and make you flex and shock you with electrodes (so painful not even Anastasia Steele would be into it).  I've given more blood than you can imagine.  I've done funny looking stretches and exercises that entertained my coworkers. It's been a second job that takes your money instead of earning a paycheck.  

Out of all those educated minds, can you guess who was able to finally diagnose me?  Was it the rheumatologist who told me "everyone has pain, I think that you are perhaps just more aware of it" than others?  NOPE!  What about the neurologist who said "If you have a problem, then I have a problem and I know I don't so you're fine.  Go home and rest well."  NOPE!  Or maybe it was another neurologist who said "I don't know, maybe it's fibromyalgia" here's some antidepressants.  NOPE!  Who was this brilliant diagnostician?  Yep it was me, a googling pro and semi-savvy researcher.  There's definitely some contempt there for a few of these doctors that I need to let go of, but I'm not quite ready yet.  My chiro and massage therapist are fantastic and helpful, but they weren't able to fix my issues and all the doctors had to offer were shrugged shoulders, Xanax and antidepressants.

The more I read and looked up, and the more things that were ruled out, I was basically left with one thing that I felt must be it.  So I ordered a special blood test with the help of my chiropractor, mailed my blood to California and waited. The results, combined with my symptoms, confirmed my suspicions.  I found a specialist, and yesterday was my appointment. I sat down and compiled a master symptom list that is embarrassingly long, but it is what it is.  She looked over it, listened to my story,  looked at my lab results, and said yes you have it. So what is this mysterious it???? Well first, here's the symptom list.  Maybe someone someday will read it and see themselves in it and it will help them on their journey to diagnosis.  

Symptom list

  • hand, wrist, arm pain
  • numb fingertips, decreased sensation in feet, numb nose,
  • tingling and buzzing sensations (feet, legs, scalp, face)
  • rib pain
  • bouts of burning and hypersensitive skin on upper body
  • waking up at night with racing heart, feels like a panic attack
  • rocking sensation, like body is gently rocking to pulse
  • internal vibrations like floor or bed is shaking
  • eye pain when moving eyeballs around and up
  • marked increase in eye floaters
  • right side hairline sweating while eating
  • itching at night (head, arms, torso)
  • occasional spacey feeling, like I’m floating or in a bubble, disconnect from surroundings
  • frequently feel achy throughout body (legs, hips, low back, feet)
  • hands and feet often cold and have become more intolerant of cold temps
  • creaky popping joints, especially shoulders and neck
  • easy bruising
  • heart palpitations
  • ears ringing or hearing pulse in ears
  • muscle twitches
  • ANA elevated (1:320)
  • anemia
  • low vitamin D levels despite supplementation and lots of sunshine
  • miscarriages

And the mystery diagnosis is........ 

I now think I've probably had this since I was a child, and it eventually overpowered my immune system's ability to keep it in check with the hormonal/physical/emotional stress of the postpartum period.  I'm working with my lyme literate provider to do some further testing and come up with a treatment plan.  Stay tuned!

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