Diagnosis Timeline

I’m getting really tired of having to explain when and how I was diagnosed with all the things, so here’s a timeline.

  • 1994 or early 1995 – Asthma
    • I was a wee baby lass and got pneumonia – apparently at some point during that mess I was diagnosed with Asthma because nebulizer treatments worked wonders … and also I responded to triggers
  • 1999ish – Still Asthma, but now I get to have my own nebulizer at home with all the albuterol sulfate I could wish for. Also corticosteroids are great!
    • Pulmonoligist Unlocked
  • 2000ish – My first foray with orthodontics because hooboi that overbite and front teeth tho.
    • Orthodontist Unlocked
  • 2005ish – Why does the musical staff look like it’s crossing its lines?
    • Optometrist Unlocked
    • Myopia/Nearsighted … also that a stigmatism tho
  • 2007ish – Oww oh dear gods why do my knees hurt so much when I try to run and also is manually relocating your kneecap normal?
    • Orthopedic Unlocked
    • Loose ligaments in both knees
    • Just take Acetaminophen and use some knee braces.
  • 2010 – You can magically grow out of asthma?
  • 2013 – Why am I so tired all the time?
    • life event related depression – it eventually clears up and my GP doesn’t send me to therapy.
  • 2014 – Why can’t I walk on my right leg anymore after doing 200 squat jumps? aka ports related calf injury
    • Physical Therapy Unlocked
    • What do you mean you’ve been wearing knee braces constantly? You could have been doing PT this whole time and rarely needed those things! Strengthen those muscles to take over where the ligaments are lazy!
  • 2014 – I can’t breathe right and the steroids, corticosteroids, and albuterol aren’t helping anymore. Also bronchitis is wayyy too hard.
    • ENT Unlocked
    • Vocal Cord Dysfunction
    • Silent Acid Reflux
  • 2015 – Oh gods what is this immense pain in my abdomen?
    • Gynecologist Unlocked
      • Are you sure you’re not pregnant?
        • Yes, and I am experiencing crippling pain. I have never had a regular cycle once in my life. It is not abnormal for me to go 3 to 6 months without a period.
        • Ok take some ibuprofen and this pregnancy test.
      • Are you sure you’re not pregnant?
        • Yes, didn’t we already rule that out? I am still experiencing crippling pain to the point where I can’t focus on school or walk upright. Also now my acid reflux is out of control even on my medication for it.
        • Ok take the ibuprofen and here’s some medication that will turn you into a drunk toddler and let you sleep through everything. Also take this pregnancy test.
      • Are you sure you’re not pregnant?
        • Yes, didn’t we already rule that out twice? It’s been two months and this pain isn’t going away and I’m pretty sure all this ibuprofen is causing a stomach ulcer.
        • Ok, we’re going to send you for that super invasive test that we probably should have done after your pregnancy test came back negative — I mean who just goes months without a cycle?
        • ME – I TOLD YOU I’VE NEVER BEEN REGULAR. Do I need a diagnosis for that?
        • Ehh the female body is mysterious — also that test came back negative. Maybe it was a cyst?
      • So we’re just never going to figure out why I was in pain that magically cleared up after 3 months and also I’m just never going to have a regular cycle then?
        • Nah, but here’s a birth control for you to try.
        • Ok … I grew a whole cup size and it’s making me cry constantly. No thank you.
  • 2017 – Anxiety through the roof thanks to a major life event and not physically being able to move even though my brain says to move?
    • Psychologist/Clinical Licensed Therapist Unlocked
  • 2017 – Ok my period cramps are getting really bad. Can I try birth control again?
    • Sure! We’ll just stick this thing in you arm since you aren’t eligible for an IUD because your anatomy is really weird.
  • 2018 – Uhhh I’ve had a month long period?
    • Oh shit, time to try a different form of birth control.
      • Ok but now I have no sex drive. Is this my reality now?
      • Yes.
  • 2018 – Uhh I’m getting really tired all the time again. Can we check my TSH levels since I have a family history of hypothyroidism?
    • Sure! Also you were right; here’s some synthroid.
      • I’m still tired and it’s been like 5 months.
      • Oh, well you’re TSH is still really high – have some more synthroid.
      • Cool. Looks like I’m finally getting my hair back, but I’m still somewhat lethargic compared to before.
      • Ehh close enough.
  • 2019 – Ok my body isn’t doing the things I want it to and my TSH levels are still in normal range. Time for therapy again?
    • Sure! So what brings you in?
    • I am filled with depression and self loathing and also it physically hurts to do things but not in the depression kind of way.
    • Ok, let’s work on that, and also that sounds partly physiological. I’m getting you set up with your GP to see what bloodwork and specialists you might need. Have you ever considered that you might be disabled now?
    • OHHHH
    • Depressive Disorder Unlocked
  • 2020 – Ok I admit I’m disabled and need to practice pacing exercises, but what’s with this pain in my arm and hands?
    • Rheumatologist Unlocked
    • Ehlers-Danlos Syndrome
    • Orthopedic Unlocked (Again, but make it for upper body edition and also at a place with a hypermobility clinic)
    • Cubital Tunnel Syndrome with Carpal Tunnel symptoms
    • Occupational Therapy Unlocked
    • Physical Therapy Unlocked (again, but this time with someone who specializes in hypermobility)
  • 2021 Ok, but why am I still getting these involuntary naps, and why does physical therapy seem to be triggering them more often? Also my blood pressure drops when I start to feel funny before these involuntary naps.
    • Cardiologist Unlocked
      • Tilt Table Test = Cardiogenic Syncope; those involuntary naps were actually passing out sessions.
      • What do you mean both kinds of medications we tried made things worse? You’re too difficult. See someone else.
    • Electrophysiologist Unlocked
      • What do you mean when you pass out you stay down for 45 to 90 minutes? The cardiogenic syncope is definitely a symptom of something else going on neurologically. You need a research neurologist.
    • Neurologist Unlocked

I’m still waiting to get in with a Neurologist … also my referral from Electrophysiology sent me to a sleep clinic since the one doctor they found that might know what’s actually going on works in both neurology (for seizures) and sleep medicine (for a butt load of different sleep disorders). The weird symptoms I currently don’t have answers for are as follows:

  • Tingly Feet > Numb Feet
  • Low Blood Pressure > Lack of muscular control (a lot like cataplexy but it gets weird) > Vision Brown Outs > Vertigo
  • Lack of feel of temperature control
    • measured temperature is within normal ranges however the feeling of being cold is dominant even when ambient temperature is 80F and I’m underneath 3 layers of winter weight blankets
  • Passing out for 45-120 minutes
    • technically I can be woken up during this stage, but I will continue to experience all of the low blood pressure problems until I pass out again and stay down until the 45-120 minutes have passed
    • after passing out I still experience some degree of what seems like cataplexy until I go through a full 7-10 hour sleep cycle — imagine you need hydraulic fluid in order to use your muscles. The muscles are definitely there because you spend a load of time on PT and OT. You can’t use those muscles because there’s a leak somewhere in the hydraulics like. Sometimes the leak is small; other times it feels like someone cut 3/4 of the way through the line.
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