Updated Summary: Time from First Symptom to PSP or CBD Diagnosis

[raincitygirl]

A most unscientific summary! Thank you to all who participated (19 respondents).

Average time to PSP/CBD Dx: 3.7 years

Shortest wait time: 4 days (!)

Longest wait time: 7 years (3 respondents where PD was first diagnosed and lived with for years.)

Most respondents waited: 3 or close to 3 years (6 respondents)

2 respondents were dx in under 1 year

As best I can tell, the country of origin did not make a difference overall in the time to dx for the group of 19 who responded.

UPDATE July 13/18: 20 more responded. Lots more "long period" respondents who spent years under PD dx (and 2 who spent years in ophthalmologic testing & dx). If I INCLUDE those described above the average time from symptom to dx is 5.4 yrs. If I REMOVE the PD & Ophthalmologic dx respondents, the average is again - amazingly! - 3.7 years.

Cheers, all.

Anne G.

[JCRy]

Thanks, Anne.

It really seems like pot luck!

Juliet.x

[Satt2015 in reply to JCRy]

Agree totally Juliet. And thank you Anne x

[NannaB]

Very interesting. Thanks.

XxxX

[Kevin_1]

That's quite interesting.

Esp. the country thing.

Thanks

[DeDeDickson]

I know I said I would share information from the CurePSP /Mayo Clinic conference from June 30 and I apologize for not yet gathering info to post. But this conversation prompted one of the sessions about how difficult it is for doctors (even those who are aware of PSP) to diagnose the disease. I hope you are able to open the link to see the slide presentation.

xoDorie

psp.org/wp-content/uploads/...

[doglington]

I suspect the age of the sufferer has an effect on diagnosis. Chris' symptoms would have been seen as a problem much earlier in a younger person.

Also the wide variety of symptoms. As soon as I read about PSP on-line I knew what it was. It all fitted. Our GP had never heard of it.

Jean x

[beau1988 in reply to doglington]

Agreed Jean. We were told it could take 6 months to see a specialist. I think because he is classed as younger onset we were fast tracked. Though it was still a month.

Kerry

[LostinHeadSpace in reply to doglington]

I agree--my husband is 54, I think that's why they took everything so seriously. And it started with a bang--with his hand not working.

[raincitygirl in reply to LostinHeadSpace]

way too early ....

[Yvonneandgeorge]

Very interesting xxxx

[Hidden]

Good job Anne

[LostinHeadSpace]

I think another factor in early diagnosis is whether one's presenting symptoms could be something immediately life-threatening--they were very worried my husband's sudden lost of hand control could be a stroke. And because he had pain in his arm that day (totally unrelated, it turned out, because of the wood-working project we'd been doing on the weekend), they were worried about a heart attack. So they threw every test at him. (American medicine is at its best, sadly, if you're a middle-aged male with insurance, presenting with signs of a heart attack )

[aliciamq]

If you want a bunch of responses - try facebook - some asked where folks were from and 600 people chimed in from all over the planet.

[raincitygirl in reply to aliciamq]

the power of social media!!!

[Abrecheisen53]

So interesting Anne. I'm sorry didn't get my info in. Thank you for doing all the work!!!

Alice

[Khartt]

Thank you for gathering this information, very interesting !