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

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: 2 months

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.

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My story in a Nutshell

  • How long to get a diagnosis : 3 years
  • Symptoms : bright red hot feet to start, then severe edema and nerve pain Which then moved into my hands and now my face
  • Thought to be : Allergy to flip flops, socks, later thought to be possible peripheral neuropathy and trigeminal neuralgia
  • It was : all being caused from EM
  • Damage while undiagnosed : nerve damage, tissue damage, muscle atrophy, severe depression and anxiety
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My story in a Nutshell

  • How long to get a diagnosis : 12 years
  • Symptoms : erythema, pins and needles, pain (pressure), pain (burning), fatigue
  • Thought to be : “heat allergy”
  • It was : Erythromelalgia
  • Damage while undiagnosed : I thought I was crazy, and my condition is progressive - I may have quickened the pace of the progression by not knowing.

Thank you everyone for your stories! Our writer is working hard to put something together.

We really appreciate your contributions.


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.


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