Hmmmm Becstar … They used to say that I was double jointed too, and dropping into the splits was my signature move when I wanted to impress in high school gymnastics. Sorry, this is weird. PsA is weird. We’re weird. LOL
David, I know. It took just as long for me to get diagnosed, and the psychological (let alone physical) damage from that is considerable. Now, though, you need to focus on getting the best care that you can. It may take some time and a few fireworks, but you now know what you have, and you’re in it for the long haul. Now do what you need to do is cobble together a team of good doctors who you can trust. This isn’t going away. And after all you’ve gone through, you deserve the best care possible.
PS Biologics have an excellent safety and side effect record. As scary as the warnings sound, the reality is that most people take them with few problems and good results. PsA, on the other hand, has inflicted a great deal of permanent damage on some of us.
I think the last time I heard somebody posit a number for how many genes may predispose to PsA it was 35 or thereabouts. So I'd guess that many of us will have certain things in common apart from PsA. And 'guess' it is because I don't even really know what a gene is. But anyway, apart from ensuring our obvious intelligence and good looks, perhaps some of those genes also give us stretchy ligaments .....
Seenie said:
Hmmmm Becstar ..... They used to say that I was double jointed too, and dropping into the splits was my signature move when I wanted to impress in high school gymnastics. Sorry, this is weird. PsA is weird. We're weird. LOL
Excellent Sybil LOL "ensuring our obvious intelligence and good looks"
I'm new to the "A" of my PsA......which started on March 22nd of this year.....obviously very recent.....I'm on my 3rd Rheumatologist and 2nd Dermatologist.....NO ONE WANTS TO STATE THE OBVIOUS !!!....VERY FRUSTRATING....I MADE the Dermatologist take a biopsy of the "P" today to prove what I already know.....I'm a text book case...My mother had Chrons.....I was an autoimmune "Hot Mess" as a child.....mild almost none existent psorisis (2 small spots max on my arm and knee) and then sudden onset of joint swelling in my hands and wrists.....and now full blown "P" all over my body.....What more do these Dr's need ?????? ....GET A CLUE ALREADY !!!
Sorry to say, TD, we’ve seen that kind of thing before and yes, even from rheumatologists. I sometimes wonder if doctors get “marks off” for diagnosing a case of PsA. Really, I don’t get it.
ThreadDesigns said:
I’m new to the “A” of my PsA…which started on March 22nd of this year…obviously very recent…I’m on my 3rd Rheumatologist and 2nd Dermatologist…NO ONE WANTS TO STATE THE OBVIOUS !!!..VERY FRUSTRATING…I MADE the Dermatologist take a biopsy of the “P” today to prove what I already know…I’m a text book case…My mother had Chrons…I was an autoimmune “Hot Mess” as a child…mild almost none existent psorisis (2 small spots max on my arm and knee) and then sudden onset of joint swelling in my hands and wrists…and now full blown “P” all over my body…What more do these Dr’s need ??? …GET A CLUE ALREADY !!!
I would think they actually get "brownie points" with the pharmaceutical industry.......but the fear of malpractice supersedes it..... the meds that actually help us are potentially toxic (for some people) so the Dr's demand proof beyond a reasonable doubt before they give us the "Key to the Mint".......
Well, I don't know about this ..... I'm in the UK and things are different. In some ways.
However the all too common story from various parts of the world is of symptoms being missed, dismissed and mis-diagnosed, sometimes for decades, rather than being carefully evaluated and considered due to the fact that strong medicine is required.
But I understand your frustration about doctors not stating the obvious in your case. Last year, 4 years after my PsA diagnosis, my previously mild-to-non-existent psoriasis went crazy. It took a few months, 4 (maybe 5) dermatologists and a biopsy to decide for certain that all its different manifestations across my body were psoriasis. At least we got there in the end.
If the 'A' part has been making its presence felt since March .... that will feel like aeons to you, but it's not long. Keep at it, you'll get there. Perhaps we can help .... perhaps someone here can recommend a rheumy near you.
ThreadDesigns said:
I would think they actually get "brownie points" with the pharmaceutical industry.......but the fear of malpractice supersedes it..... the meds that actually help us are potentially toxic (for some people) so the Dr's demand proof beyond a reasonable doubt before they give us the "Key to the Mint".......
Thread revival! Member reunion! This is one of my favourite threads ever. How is everyone doing? Got anything new to report, or a “wake up world” insight for us?
And for those we haven’t heard from recently, how are you doing?
Generally I’m doing pretty well and coming to terms with the ebbs and flows of the disease some 9 years after diagnosis. I have cycled on and off of a bunch of medications. My rheumy encourages me to change if/when they are no longer effective (not the common course of action according to others on the site) but I’m finding I can get by for 9-24 months depending on the medication before things fade.
I still work full time in a pretty demanding job with quite a fair bit of driving. I’m able to manage that as long as I prioritize my wellness for work. That means sometimes other things fall away, but I need the job because it gives me my health insurance!
Right now I’m in the middle of building a deck on the side of my house so I’d say I’m currently kicking PsA squarely in the pants!
Decking might be okay but do not, on any account, haul concrete slabs. I’ve thoughtfully tested the impact of that on PsA so you don’t have to. Just say ‘NO’.
1 Like
Ha! I mixed 9 x 60lbs bags of concrete on a Saturday two weeks ago…couldn’t lift my arms above my shoulders for two days after!!
1 Like