Hello!

Thanks for the replies. I read your posts all the time, Seenie. And I know that you've been through the ringer with late diagnosis. Also, I remember how that one rheumy said you had mild disease when you did not. Sybil, what you've been through sounds a lot like me. I think my osteo damage is from the PsA - but I have no way of knowing for sure because my x-rays and MRI's were so recent. Nothing to compare it to. Well, the MRIs were months ago, maybe they will tell be something after my next MRI's. But, you're right. It doesn't help to be obsessed with it - just important to move on. Just hard to. I want to sue the orthosurgeon who missed all this. He delayed my diagnosis so long because he had me brainwashed it was just osteo. Even after all my calls and appointments when I spelled out my pain! Someone at work told me that doctors look at us like "hysterical females". They don't listen to us well. Another gal said that you have to "grab em by the necktie and make them listen to you!" I've sure learned a lot about advocating for myself. I'm one of those that gets tongue tied around them. Thanks for the encouragment, David. Hope I haven't male bashed too much!

skytech said:

Hello Liberty

Im so sorry to hear about what you had to endure, lets hope to get your health on track and cope with this PSA nonsense we all have. Nice to meet you!

David

Liberty said:

Thank you Sybil. I read your posts all the time. Very informative. You always educate me. I would say that it took about 2 1/2 years for my diagnosis from the start of my search to the actual diagnosis. But, looking back, I know that I had mild symptoms for awhile. So... I know that's not the longest time to wait for a diagnosis but it sure felt like it. I'm obsessed with the osteo vs PsA damage question because I just feel that my osteo went downhill in that 2 1/2 years. I just want to heal as much as possible. The triple whammy really hit me: delayed diagnosis with years of searching, diagnosis, meds. It was a lot to take at once when I never had real back issues before. I went into a deep depression at Christmas break. My mother's wrongful death a few months before my diagnosis was the beginning of the spiral down. I have faced so much tragedy in the past 3 years. Ex-husband's suicide, melanoma diagnosis (all clear now), niece's death, finally my mother's. All the deaths were violent accidents. But all my doctors and physical therapists chalked all my symptoms up to stress or osteo which delayed things even more. I knew and felt I had a rare thing wrong with me but I had no knowledge of who to go to for help. Wish I had just gone to Mayo Clinic. I'll never understand why Doctors miss this disease so much. Thanks for your kind words. Just looking for a new normal with as little pain as possible. Thanks for the note, David!

sybil said:

The interplay between OA and PsA comes up a lot and in my experience it foxes a lot of doctors. I tend to suspect that some doctors prefer to keep the two entirely separate and reject any interaction or connection just to keep things simple or to get the patient out the door. But then I have a nasty suspicious mind.

What seems increasingly clear to me from some great discussions on this site and the best rheumys I've seen is that the two conditions often go together and the presence of OA shouldn't be used as an excuse to play down the severity of PsA. I gather that if you have PsA and you have damage then the vital thing is to treat the PsA aggressively and there's not much point trying to untangle exactly which condition is to blame for what & when.

So sorry to hear that it took ages to diagnose PsA - that seems to happen so often. But glad that you are receiving treatment now and I hope it helps considerably.

Liberty, you really do take notes, don’t you! LOL.
One thing particularly stood out for me in what you said –
"It doesn’t help to be obsessed with it."
Right on, absolutely. I stopped being obsessed the day that I got what I knew was the right diagnosis and appropriate and effective treatment. That was totally liberating for me: I felt things were as much under control as they could be, and at that point I could move on.
I can really totally relate to your wanting to sue that orthosurgeon! Better, though, to pick the pieces up and move on.

Wise words, Seenie. Hope I can get my head in that place. You are brave for letting it go.

Whoa, Liberty! I said I wasn’t obsessed any more … I didn’t say I had let it go. ROFL But I’ve let it go enough to be able to move on, make plans (with allowances)and not let it totally rule my consciousness and my activities.

If I had to identify the two things that have helped me the most, it’s having really good doctors who I trust, and also having them accessible to me. I can phone or email, and I know that they will respond. That’s like having a safety harness so that I can do my thing without fretting about “what if”. That’s why it’s so important to keep looking until you find the right docs.


Thanks, Anna. What kind of PsA do you have? Were you misdiagnosed too?
Anna said:
Liberty,

I was on Humira for 7 years, and it helped my pain a lot. I was a nurse and have had this disease for over 30 years. You can read about it in my blog. I'm retired now but worked to age 62.

Unfortunately your story of misdiagnosis is all too common.

Welcome to the club! Hope to see you often!

Welcome Liberty! This is a wonderful group to share information, get advice and support. I hope you will visit often.

warmly,

Frances

Thanks Frances! It is a great group and I read your posts often! I have learned to accept this disease through this group. I read the discussions almost every night. Great stuff!

I was also misdiagnosed - for 18 months.

Liberty said:

Thanks Frances! It is a great group and I read your posts often! I have learned to accept this disease through this group. I read the discussions almost every night. Great stuff!

That's about how long I was misdiagnosed. Although, I had symptoms for at least 3 years. I read your page. How is Remicade working for you? I've heard it's great. I've only been on Metho and Humira for 3 and a half months. I've seen improvement but I'm hoping for more. Thank, Frances!