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 :
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.
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.
Symptoms: erythema, hot skin, paresthesia (pins and needles), pain (pressure type), pain (burning type), explosive onset
Thought to be: patellofemoral pain syndrome, gout, pseudogout, rheumatoid arthritis, complex regional pain syndrome
It was: Erythromelalgia
Damage while undiagnosed: None. My doctors and I cycled through various diagnoses rapidly over a period of a couple months. I led them to the correct conclusion and they concurred. It took 4 additional months to find a doctor experienced with treating erythromelalgia. I believe my fast diagnosis benefited subsequent treatment, which has been very successful.
I’m sure this is one of the most common things to happen to undiagnosed rare disease patients. I remember one of my first reactions to my diagnosis was “you mean I’m not crazy?”. The validation of a diagnosis was so welcome, even if the disease I’d been “gifted” wasn’t.