So I only have one week to go until my rheumy appointment and I am feeling nervous and anxious about it. My greatest fear is that they don't find anything wrong with me and I'm just a big complainer.
My blood work hasn't been that alarming, I don't think any of my levels have been that elevated. Other than my fingers retaining water, I've never had a super swollen joint.
I just had about 11 X-rays done today and because I can't leave things well enough alone I got a CD with my images on it. The only thing that looks like it could have arthritis in it are my SI Joints.
My neck which has bothered me for years looks normal as do my hands and feet. (I'm not in the medical profession so how do I really know ??)
Maybe all of it's in my head?? Maybe I have convinced myself that this is what I have.
Maybe I injured my back at some point and thats how my back got bad, and the rest is just from being inactive. (??)
Maybe I just have a low tolerance for pain??
As you can see I've been full of doubt lately. I think waiting to see a specialist has added to my doubt that I even need to.
Quit doubting yourself... there are no actual blood tests to diagnose PsA. I just confirmed that with my Rhemy just this last Monday There may be certain tests made with your blood that will be elevated... Confirm with Dr. *C-Reactive Protein level - that will tell you whether you have inflammation... but it does not pinpoint where.. just showing that you have it somewhere in your body. He told me X-rays are a part of the puzzle.. along with nail changes... I probably had mine for several years and didn't have a clue what I had.. I had never heard of PsA before that.. so you can imagine what I thought when I was told. If you do get a good Rheumy... he will be very thorough with you on your first visit... Physical exam, asking you about your symptoms... etc. also remember this too... I was afraid... to think about using a biologic (Enbrel) is mine...someone told me, don't be afraid to be afraid.. Does that make sense? It clicked with me immediately.
The Enbrel was a godsend for me... I truly believe if it wasn't for Enbrel - I would be bedridden today...
Let me know if you need a helping hand or a shoulder to rest on...We are all here for you
Meg, with the amount of joint damage that I have, I STILL have moments that I wonder whether it’s all in my head. Not for long, mind you … So keep calm and be sure, very sure, that you make a list to take with you to the rheumatologist.
So you can’t see anything on your x-rays? I once had the amazing experience of sitting with a radiologist as he looked at the shots of my feet. I saw nothing. He saw EVERYTHING. And I got a colour commentary.
Blood work not alarming? Read the recent thread on inflammation.
Most of my imaging, all x-rays, have looked pretty normal. Minimal joint space narrowing, etc. My blood work looks pretty normal, except for being mildly anemic. I’ve only recently begun to have nail changes, and have minimal psoriasis.
But I’ve never doubted the diagnosis. Between inflammation, joint pain, etc, I’ve never doubted the diagnosis. I’ll tell you, the meds that I’ve been on have clearly been helpful overall. I wouldn’t worry. Bring lots of notes detailing history etc and you’ll be good. Even if nothing obvious shows up in bloodwork and imaging.
Deep breaths! I think many of us have the feeling that it must be all in our heads at times. I was told that for so many years by medical professionals that the thought still lingers even though I'm SURE about my diagnosis.
I do not have ANY inflammatory markers in my bloodwork even with ankles swollen so huge I had no range of motion and could only shuffle around. My si joint damage is what my rheumy said was clear evidence of PsA.
Thank you so much for all your replies. You have all truly been a godsend!!
I haven’t been feeling as bad lately so I think that is making me doubt myself as well.
I’m going to work on a list early next week about all my symptoms and then all my questions.
Do you think it’s worth it mentioning all my tummy issues too?
I’ve never been diagnosed properly with IBS or anything like that, but I’ve read that sero negative arthritis can be tied to certain tummy ailments.
Maybe bring in some pics of when my nails were really bad??
Hi Meg, none of my rheumy appointments have ever coincided with one of my problem episodes so now I take photos of anything which happens whether it's swelling or skin problems and the docs have been happy with this because it does help them. So yes, take the pics of your nails. And do tell them about your tummy .... I'd had problems since 2000 which pre-dated my PsA diagnosis by twelve years and they were interested in that as well.
Another thing I mentioned was my vitamin D insufficiency and all of a sudden my rheumy is sitting up and drawing me a diagram linking vit D, IBS and PsA ......
Now I tell them anything/everything that has/is happening to me. I figure with their qualifications they know better than me which to rule in or dismiss.
Absolutely mention your stomach issues, as well as any pictures and journaling of flares, increased pain or any other changes you have experienced along with any family history. Good luck!
West_CoastMeg said:
Thank you so much for all your replies. You have all truly been a godsend!!
I haven't been feeling as bad lately so I think that is making me doubt myself as well. I'm going to work on a list early next week about all my symptoms and then all my questions.
Do you think it's worth it mentioning all my tummy issues too? I've never been diagnosed properly with IBS or anything like that, but I've read that sero negative arthritis can be tied to certain tummy ailments.
Maybe bring in some pics of when my nails were really bad??