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)
Not to sound like a know-it-all, but many of your symptoms listed above are symptoms of Fibromyalgia, and EDS.
ReplyDeleteIt 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!
ReplyDeleteAn 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.
ReplyDelete@BubbleGirl Yes, some of those symptoms may be fibro or EDS, but others I strongly believe are not.
ReplyDelete@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!
ReplyDelete@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.
ReplyDeleteSounds familiar. (I have EDS-3 and secondary fibromyalgia, and I have most of those symptoms.)
ReplyDelete