My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Saturday, December 4, 2010

I'm going to find the right doctor...

I've decided to put together a list of my symptoms I'm having that are unexplained.  I only put the unexplained symptoms, that is symptoms that aren't any of the problems I'm already diagnosed with.  So...I'm on my search for the right doctor.  I do get to see Dr. W next month (pray that there is no snow).  She's across the state and is supposed to be a leading expert in EDS.  Okay so here is that master list I mentioned...

  • Daily Headaches of a new type (can rarely even wear clips in my hair anymore) 
  • Painful tension in neck and upper back, I can even feel the muscles knotted 
  • Extreme Fatigue, worse than every before 
  • Migraines 
  • Depression 
  • Visual floaters 
  • Hair Loss 
  • Hard to breath while laying flat on back 
  • Severe leg pain 
  • Dizziness 
  • seeing colored spots and lines or "halos" 
  • Very hard time thinking, "brain fog" 
  • General imbalance / clumsiness 
  • Memory loss 
  • Can't pee but no UTI 
  • Intolerance to bright light / difficulty adjusting to light change 
  • Vertigo from position change or sudden standing 
  • Difficulty walking on uneven ground / feeling ground under feet 
  • Difficulty driving 
  • Difficulty negotiating steps 
  • Pressure / pain in the neck 
  • Pressure / pain behind the eyes (soreness in the eyeballs) 
  • Back pain 
  • Neck spasms 
  • Insomnia 
  • Swaying 
  • Pain when changing position 
  • Tingling / crawling feeling on scalp 
  • Intolerance to loud / confusing sounds 
  • Hot flashes 
  • Heat and cold intolerances 
  • Pain & tension along ear / eye / jawline 
  • Difficulty swallowing 
  • difficult breathing while laying on my back 
  • sore throat 
  • heartburn that only recedes by laying down 
  • Spontaneous vertigo 
  • Poor blood circulation / cold hands & feet 
  • Sinus / mucous problems 
  • Severe constipation 
  • Abdominal swelling and distention at night 
  • Nausea 
  • Difficulty reading / focusing on text 
  • Depth perception problems 
  • Swelling in legs, feet, hands, and fingers - especially in the morning 
  • Increased sweating 
  • Proprioception
  • Pain in shoulders and arms that feels like frozen acid being poured on me 
  • Slurred speech 
  • lack of gag reflex 
  • Pressure / tightness in chest 
  • excessive thirst 
  • Electric like burning sensations 
  • Unequal pupil size (doctor commented on that once before but didn't investigate it any) 
  • Popping / cracking sounds in neck or upper back when stretching 
  • Dizziness 
  • Dry skin and lips 
  • Stomach aches 
  • Seizures 
  • possible TIA (mini-stroke) (nuero did dx) 
Whew! What a list!


  1. Not to sound like a know-it-all, but many of your symptoms listed above are symptoms of Fibromyalgia, and EDS.

  2. It sounds like you might have thethered cord syndrome and/or Chiari malformation. They are both closely related to EDS. I hope your appointment goes well!

  3. An awful lot of those could also be tied in to blood pressure & autonomic nervous system problems, like neurally mediated hypotension or some of the more severe forms of orthostatic intolerance (which both often have a tie in to Fibro, ME/CFS, and Chiari). I'd suggest keeping an eye on your BP/pulse throughout the day & when changing positions - most cardiologists will miss OI issues/NMH unless they really take the time to look for them.

  4. @BubbleGirl Yes, some of those symptoms may be fibro or EDS, but others I strongly believe are not.

  5. @Anonymous#1 That is what I'm afraid of, at least the Chiari malformation part. I don't know what tethered cord syndrome is. I just don't know where to START, you know? But as soon as I figure our where I'm doing it. I am thinking of after the holidays calling and talking to the neuros at University Hospital to see if they are familiar with it. I hope so. If not I'll just keep going. Wish me luck!

  6. @Anonymous#2 I'm seeing a cardiologist now, to test for autonomic nervous system problems and mitral valve prolapse. I haven't seen her for the follow up since the tests, but the tech administering the Tilt Table Test said it looked normal, plus I didn't pass out. Instead I cried my eyes out trying to stand up that long in pain and we had to end early. :-( The appointment with her is in the next few weeks, I'll definitely be blogging it.

  7. Sounds familiar. (I have EDS-3 and secondary fibromyalgia, and I have most of those symptoms.)


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