So I'm curious about this my fellow Patient Leaders...

…for the condition you have been diagnosed with (or if you are a caregiver, the condition the person the person you care for was diagnosed with) or the condition you advocate for, how long did it take to get a diagnosis?

In my case (caregiver for a parent who had front-temporal dementia, a not uncommon cause of dementia but it is not the most diagnosed, that would be Alzheimers), the correct diagnosis literally took YEARS.

I’ll save my story for another time because I want some idea of how long is typical for other diseases for comparison.

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My father had FTD, or Pick’s disease. I knew that there was a problem. And I knew that it was not just him getting older. But I was the “difficult” child and everyone, including him, fought me. I kept pressing. And it turns out that my intuition was confirmed with a diagnosis years after it had begun. Unfortunately, difficult had progressed into estranged. Then a huge pile of money was lost to internet scams, phony pills and then a greedy new wife. Nobody would do the right thing and I was not allowed to. My father died an angry and broken man, estranged from me, my wife and his only grand daughters. So sad.

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My lupus diagnosis took over four years, and was “caught” by preoperative lab work.

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My sincerest apologies to you Jeff & to your broken apart family.

I am very personally aware that many men (& women, though FTD is the most commonly diagnosed dementia cause in men under 65) who die of FTD (Pick’s disease is its former name) die alone, their families alienated (spouses often divorce & adult children often abandon people due to the bizarre & off-putting behavioral symptoms that often accompany the behavioral variant of FTD aka bvFTD), any money or assets long gone, employment lost, friends fallen away, only scammers stick around to pick many people living with FTD clean.

In a weird way, I was lucky that I was living with my father (not by choice exactly, I had come home to care for my mother who was then recovering from reconstructive surgery from a mastectomy due to breast cancer, unfortunately some months later, she was killed in a freak car accident, so I never left him plus I think my mother & I both knew something was ‘off’ about Dad but of course we had never heard of FTD).

I inherited my father’s care & his undiagnosed weirdness which seemed to be like a worsening psychiatric illness but luckily I noticed that a man fluent in 2 languages was losing his nouns & speaking an elaborate word salad: Dad had the language variant of FTD known as primary progressive aphasia (PPA).

When Dad got to the mid stage progression of FTD, he seemed more like someone with Alzheimers (the hallmark ‘memory loss’ was there) but because Dad also had anosognosia (essentially an unawareness that there was anything wrong with him, it’s also a hallmark symptom of FTD) it literally took years to get Dad in to see a doctor (he was otherwise healthy, he could not see why he would or should go to see his primary care physician) & formally diagnosed with FTD.

FTD still has no FDA approved drugs or other treatments, it’s a chronic progressive & terminal illness. Dad was diagnosed less than a year before he died (the neurologist’s office callously & in violation of HIPPA privacy laws left a message on the answering machine of our home phone on Christmas Eve 2014), just soon enough for me to get Dad accepted to Medicare hospice at home care assistance. We got a good 7 months of helpful care once Dad started falling & couldn’t reliably get himself up in April of 2015 (about a week after his 75th birthday) & he died peacefully in his own bedroom at home in a medical bed provided by hospice on the day before Thanksgiving of 2015.

Anyway my help of other caregivers began years ago along with some earnest limited advocacy for people living with FTD and any & all family/informal/unpaid caregivers of people living with any type of dementia, especially those who are providing care in someone’s home.

I’d say it took about 8 & a half years for Dad’s official diagnosis, but sometime in 2012 I realized it was probably FTD & began using the techniques of occupational therapist & beloved dementia expert Teepa Snow to manage Dad myself (I’m an only child so at least I was spared the agony of a family coming to grips & into unresolved bitter conflict over a relative with FTD).

Teepa says 4 out of 5 families that face dementia don’t go forward harmoniously, not that will ever totally make you feel better Jeff, but you have plenty of people who were alienated by this syndrome.

Wow that took a while, your symptoms must have been very subtle until then, Amanda, that & a lot of physicians probably need remedial education in noting the symptoms of & diagnosing lupus. Glad that lab figured out what was really going on.

My autoimmune diagnosis was made, in part, about two years after I first noticed symptoms and 1 1/2 years after I brought it up with my primary. As with many autoimmune diseases though, right now it is inconclusive, so UCTD, but likely Sjogrens secondary to Lupus.
While going through this process, I mentioned a new symptom that I assumed was related to the autoimmune disease. Primary and rheum both said no and referred me to neuro. I received my Parkinson’s diagnosis about 5 months after I mentioned the new symptom to my primary.
The autoimmune diagnosis and the Parkinson’s diagnosis happened with three weeks of one another.

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It was roughly 4 years for my Rheumatoid Arthritis. I kept getting the ‘you’re to young’ card pulled on me until I found an amazing primary doctor to started giving me referrals to any and all specialists I had symptoms for. Thus began a snowball effect of several co-morbidities as some doctors are slowly uncovering as we piece everything together. It’s was a lot to take in at the time, but a blessing as I look back now seeing everything of my childhood making a bit more sense.

Thank you for your story. I believe my grandmother had FTD, but I don’t think it was ever diagnosed. She believed she had a mild stroke and blamed stress from family members as the cause of it and the cause of her losing vocabulary. However, as an OT I know this not to be true. If there was more clarity and education about her condition from her physicians I think it would have resulted in better care and less destruction of relationships.

I have 6 rare diseases. Two of mine took 3 years for diagnosis I complained for the three years asking for help and to do scans but was refused. As soon as they did, three years later, I was diagnosed and sent for surgery. One if my rare diseases was diagnosed very fast once it was noticable. I was born with it and wasn’t diagnosed until I was 13.