Self Diagnosis

[PRwarrior]

Q. Did you diagnose yourself with ‘PR’ via the internet etc before getting a diagnosis from the Dr/Rheumatologist?

Q. Do you tend to look up/Google other symptoms now (regarding other problems) before or after you go see the DR?

Q. How accurate do you think your self diagnoses are compared to the DR’s diagnosis?

[Winnie]

This post makes me laugh ... only because since my symptoms started i have become a bit of a Dr Google ... i didn't self diagnose myself with PR but i thought i had carpel tunnel and various other things, the good thing about it was that atleast i was giving myself a diagnosis even if the doctors weren't lol. I am also quite obsessed with it now and as soon as anyone is ill, i go on the internet and see if i can figure out what is wrong with them, my greatest success was the other week when someone had a swollen eye ... conjunctivitis it was !!! i know it wasn't much but i was right and that's what counts lol

Thanks for making me smile

Rachel x

[katie]

1. I'd never heard of PR before I went to the rheumy.

2. I google everything before I see a doc now.

3. I'm really carefully about self diagnosis. I can find elements of myself in so many things that it's easy to get carried away. There are lots of stories of medical students who study diseases and start thinking they have those symptoms. I still keep researching but in the beginning I try to be a cooperative patient and learn a few things from the doctor.

[katie]

Another thing I've observed from my years on the forum. Internet questions are a double edged sword because if the doc is presented with a list of internet questions he/she has to spend much of the appointment going through them. Then the patient leaves angry that the doc didn't tell them enough about what the doc DID diagnose. Well, if you know going in that an appointment is 20 minutes and you spend 19 of them talking about what you don't have, you aren't going to get the concentration on what you do have.

There is a small movement starting to make electronic connections with docs, where you can email questions and get online answers. I think it will be slow going, because the docs will have to figure out how much to charge for email time. Of course, the things they would discuss in mail are limited. On the other hand, 20 years ago people wouldn't have believed all of the things the internet can supply so maybe the day will come when we can do a partial consultation online.

( This is me controlling myself not to mention the politics of the US National Healthcare Bill)

[Kanderson]

Katie =

[Jen]

I've diagnosed myself w/ PR but waiting for an official diagnosis from a rheumy. My first GP said I had a fatty acid deficiency so I started downing flax seed oil terible stuff. Told him my joint pain was spreading he laughed said it wasn't. My second GP ran me through all the tests lupus, RA, fibro and neuralgia. He refered me to a rheumy she said arthritis doesn't move around and I have no joint damage. My GP said he ran out of ideas so here I am. I always felt this was like arthritis. Watched the news a few wks ago man died in the wilderness while camping his landlord said he suffered from a rare form of arthritis some days he couldn't even get out of bed. It struck a cord so I googled it and found PR which describes me totally. My GP is faxing different rheumys requesting diagnosis in PR he hasn't heard of it.
I am sad I might have this, happy I might finally have a name for it.
Sorry for rambling. It's just so great not to be alone. It feels like people think I'm faking it.

[Lacey]

I still spend time googling the symptoms sites. PR is such an unusual diagnosis that I find myself wondering if the doctor got it right.