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.