Chiari Online Support Group

How long did your diagnosis take?

Our writer/publicist is working on an article for our Ben’s Friends blog in which she points out that it can take a very long time to get the correct diagnosis when what you have is a rare condition or disease. And of course, until you have the right diagnosis, treatment (if you get any at all) is probably not going to be all that successful. So meanwhile, we, and often our families, suffer in all kinds of ways.

Our writer would like some short diagnosis stories from people on this community. Can you help out? She doesn’t need to know your name, but if you could post your story here in four or five lines, she’d appreciate it.

My story in a Nutshell

  • How long to get a diagnosis :
  • Symptoms :
  • Thought to be :
  • It was :
  • Damage while undiagnosed :

Copy and paste the bullet points into a reply and write some quick points.

Thanks for sharing your diagnosis story! Watch our blog for this, and other stories and news.

Seenie from Modsupport – mine is below as an example.

How long to get a diagnosis: 20 years

Symptoms: steadily worsening aches, pains, skin complaints, fatigue, needed knee replacements

Thought to be: menopause, overweight, “getting older”, lack of exercise, hypochondria, OCDisorder

It was : Psoriatic Arthritis

Damage while undiagnosed: Lost social opportunities, unable to care for family members effectively when they needed my help. 2 knee replacements, 1 hip replacement, took early retirement at greatly reduced pension, joints of mid-feet damaged and not repairable. Thought I was completely nuts.

(Seenie from Modsupport)

  • How long to get a diagnosis : 2013 ( sufferin since 2009) and got second diagnois to include cervical instability, retroflexed dens in 2014.
    2020: EDS diagnosis and EDs confirmed via genetics doctor.
  • Symptoms : Severe fatigue, brain fog, confusion/disorientation, muscle weakness, severe pain t/o body but especially cervical pain/scapula pain, severe headaches, pressure in head, tachycardia, hypertension, vertgo, balance issues, sleep apnea ( diagnosed 2014), insomnia, swallowing issues, blurry vision, numbness/tingling, digestive issues, empty sella synrdome/pituitary tumor ( since resolved itself),
  • Thought to be : Fibromyalgia, myofascial pain syndrome, psychological issues, ( even with validation by med docs of chiari), some unkown, rare viral, fungal or bacterial infectious-disease, multi-systemic autoimmune disorder
  • It was : :complex chiari= (chairi, cervical instability, retroflexed dens) and EDS
  • Damage while undiagnosed : Rapid cognitive decline, further damage to CNS, further damage to odontoid process ( cervical instability) which created an odontoid pannus, severe and debilitating pain, severe insomnia, damaged relationships due to lack of diagnosis and thinking I was “making this up”, developed “hnocturnal hypoxia” due to undiagnosed issue during 1st sleep apnea test, cost of moving to three different states to seek care and ultimately getting surgery, developing painful symptoms from EDS without doctors recognizing it, loss of career/friends, issues with family and needing pain management- appearing “weak” if I needed pain meds to function at any level. Embarrassment at ER or other specialist who wrote all of it off as “incidental” until I got neurosurgeon formal diagnoses with recommendation for surgical intervention. Lengthy diagnosis time(s) left others around me to question the validity of my disorders.

How long: I was diagnosed in 2017 but complaing of symptoms for years. Vertigo got me the MRI

Symptoms: head pain while bending over, coughing, sneezing. Brain fog with slurring speech & not being able to find words & memory loss. Complaining of right eye pressure & blurred vision & sensitivity to light. Muscle pain & cramps. Severe fatigue. Shoulder & neck pain. Hard time swallowing but intermittently. Chest pain. One arm longer than other.

Thought to be: mental illness, anxiety, pill seeking, magnesium a little low, anemic. The biggest one was blood work always came back normal so I was fine. I’ve been to every specialist possible.

It was: chiari malformation type 1 & Polands syndrome