After my rheumatologist telling me that I wasn’t severe enough to warrant a biologic, and then my orthopedic surgeon telling me my bone-on-bone hip damage looked inflammatory, I got mad. All along my gut feeling had been that my PsA is worse than the rheumie thought. I asked my GP to send me to The Psoriatic Arthritis Clinic in Toronto. This clinic is run by Dr. Dafna Gladman, a world class expert in PsA, and the lady in the video on the main page of this board. My GP was happy to oblige, and my big day was today.
I’ve never experienced such a thorough and amazing work up: two hours of history, blood work, physical examinations, and finally, x-rays. They x-rayed hands, feet, neck, spine and pelvis. The works.
The bottom line is this: my gut feeling was so right. I have severe disease. Because I also have a high pain threshold, I do not perceive pain until there’s damage. And I have a lot of damage. Anyway, I will be starting Enbrel after I’ve had my hip replacement at the end of the month. Thank goodness for that. I will be back for follow-up in June.
The PsA Clinic is amazing: everybody was very very kind and extremely helpful, and very obviously expert with this disease. I asked whether they would take me on as a patient, and they were glad to accept me. So this is where I will be coming in future. Further away from my home, but so worth it for the quality of expertise and the kindness of everyone around. When they said they would be happy to take me, I sobbed with relief. I couldn’t stop crying. There’s hope. (And no more dealing with the junk-yard-dog of a receptionist at my rheumie’s office, LOL.)
I am so glad you got to go to a world class center. Wish there was one near me in the South. I would go in a heart beat. I am doing well I think, but I would like to go to someone that specializes in the disease. Please share your experience so maybe we can learn through you.
This is fantastic news Seenie! I am so glad you finally got someone to listen and acknowledge there really is something wrong. You are an inspiration! Please keep us updated as to what your progress and experiences are. Thanks for sharing.
Seenie I am so sorry your disease is worse than thought but I am so glad you are in good hands and under good care now. You have been in my thoughts and prayers and I am sending you warm hugs. I hope you are feeling better really soon.
Seenie, I'm so happy you are getting such good care now ! That's wonderful that you found experts that are treating you correctly and compassionately. I'm going to look up the book you mentioned - I haven't heard of it. thanks for sharing the link. Are you getting your hip replacement at the end of March?
Lets all move to Canada so we can go get World-Class treatment like Seenie !
Rebel mom said:
I am so glad you got to go to a world class center. Wish there was one near me in the South. I would go in a heart beat. I am doing well I think, but I would like to go to someone that specializes in the disease. Please share your experience so maybe we can learn through you.
OMG that's a good one! hahahahahah... It took Seenie forever to get a referral there. In the US, if you want to go to a Mayo Clinic, generally, you just go.
Frances said:
Lets all move to Canada so we can go get World-Class treatment like Seenie !
Rebel mom said:
I am so glad you got to go to a world class center. Wish there was one near me in the South. I would go in a heart beat. I am doing well I think, but I would like to go to someone that specializes in the disease. Please share your experience so maybe we can learn through you.
Yup, Andrew, took me ages to get there. But I got there, and all I needed was a letter from my GP and my health card.
BTW, how I found out about the clinic: after buying the PsA book, I was surprised to see that the clinic was in Toronto. I called, and that started the ball rolling. My GP was surprised to hear that it existed. And I suspect my rheumy will be surprised to get a letter from them.
Wow!!! That is awesome( not the severe disease full of damage part;)) but the great work up. It must have been such a relief to have someone take the time to really listen and do the right test! I work in a hospital and a lot of docs have no idea about PsA. I am glad you are able to get there and have been accepted. I have trolled the clinic’s web pages looking for info. Seems like a good place to be a patient.
I hope the Enbrel will work great for you! I'm sure you already know but, once you do it a couple times it's just another thing... Good luck and I love your pretty smile!
