So I had my first rheumatologist appointment yesterday.
He said nothing is conclusive, and that nothing is showing up on the SI joint xray. I was told by my GP before that I did have evidence of erosion in my SI joints! So he’s sending me for an MRI on my SI joints. Now I have to wait for that and then I have to see him again.
I feel like none of my other symptoms were taken into account. And they (there was an internist there too) kept going on about if I had physio before and how much I work out. I’m guessing they are thinking my back pain is being caused by an injury!?
I left feeling pretty upset. And because of my previous neck problems they won’t even check my neck which has been so painful lately I can sometimes barely move it.
As for my Achilles’ tendon, she had me walk around in the tiniest office, and then said it ass probably from how I walk.
Well I don't want to be Debbie downer here, but erosion in SI joints has NOTHING to do with PsA. If don't like creepy don't read this: http://onlinelibrary.wiley.com/doi/10.1002/ca.980020406/abstract Essentially it concludes based on a a broad cadaver study upwards of 60% of folks over age 50 have synostosis which is the result of an inflammatory condition called Synovitis. It suddenly doesn't appear at 50 it starts building up before that) While its typical in AS, its only present in about 20% of PsA.
She is still looking so hope is not lost. Previous "problems/injury" do make it difficult to use those areas for diagnoses. Localized Arthritis is likley. Remember PsA is a systemic autoimmune disease that effects many parts of the body (as is RA) Your doc is (or should be) evaluating many things in addition to your main concerns.
Have you received copies of your x-ray? I just recently received copies of all my paper work over the years. It took a while to be diagnosed as my disease was rather mild at the time. It's noted on my only x-rays from 2001 reported an amorphous calcification around the greater trochanteric bursa. In 1998 I had trochanteric bursitis injections. I was having repeated cases of what was diagnosed as bursitis. Also was a very active runner and most of my flares were brushed off due to being active, however I knew something wasn't right because I was waking up with flares after doing nothing that would cause these from happening. As an active person I was aware of an injury vrs. a flare as the pattern was fairly consistent and with my family history I knew something was not right.
I can understand your frustration, sometimes the journey of being diagnosed can take a while. Did you include any family history? My sister was recently diagnosed after her first visit. Her pattern was very similar to mine and with me being diagnosed it made her journey a lot shorter. I believe her case was unusual as it usually takes a several appointments to have a diagnosis.
Keep taking notes of any increased pain and pictures of any increased swelling, keep seeing your doctor when you have any increased pain or changes so that he/she is making records too. Request copies of your file, I wish I had mine earlier! Glad you are having an MRI, I believe they show a lot more. Did you get another appointment with the Rheumy? Sorry your appointment wasn't a good experience :-(
Interesting Lamb, so your saying any changes in the SI would mean nothing?
tntlamb said:
Well I don't want to be Debbie downer here, but erosion in SI joints has NOTHING to do with PsA. If don't like creepy don't read this: http://onlinelibrary.wiley.com/doi/10.1002/ca.980020406/abstract Essentially it concludes based on a a broad cadaver study upwards of 60% of folks over age 50 have synostosis which is the result of an inflammatory condition called Synovitis. It suddenly doesn't appear at 50 it starts building up before that) While its typical in AS, its only present in about 20% of PsA.
She is still looking so hope is not lost. Previous "problems/injury" do make it difficult to use those areas for diagnoses. Localized Arthritis is likley. Remember PsA is a systemic autoimmune disease that effects many parts of the body (as is RA) Your doc is (or should be) evaluating many things in addition to your main concerns.
Okay I just found some of my paper work. When I first went for X-rays on my back they came back with finding OA in my right SI joint, with mild sclerosis and osteophytes. Also DDD in l5 and S1.
Maybe erosion isn’t the correct word?
My dad has RA and psoriasis, which when I tell doctors that they raise their eyebrows. I also told them about my extended family with psoriasis and inflammatory arthritis (two aunts, one with reactive, one with psoriasis and undifferianted, both on my moms side).
I just felt like they weren’t taking into consideration all my other pain that started right after my back started to hurt, and my nail changes.
My nails were pretty bad up until a few months ago, so of course they didn’t work in my favour this time and then I kind of think I sabotaged myself because I play down my symptoms.
He gave me meloxicam to try out for now.
I’m gonna for sure look at that sturdy… I love creepy hahahah
Erosion is typical of RA stuff just disappears. Sydesmophytes would be a help here, but dang you have Osteophytes. They are both "bone spurs" but one comes from OA and one does not. I can understand why they are confused. The MTI will help, but call your doc before the MRI and ask him if they are going to do stir sequences with and without contrast. She will either say "of course" OR pause and say "why do you ask" (she is buying time) You pause as if she is an idiot A drawn out "huuunh?" is good. After a slight pause you say "If you are half as frustrated with this whole process as I am, I would have assumed we'd want to cover as many bases as we can in one study given my confusing family history....."
You have spoken volumes with that statement. It will give you a chance to reiterate your family history which with your symptoms is a lock for one of the spondyloarthropathies.
If we were to start a pool, I put money that your final Dx will be U-SpA
West_CoastMeg said:
Okay I just found some of my paper work. When I first went for X-rays on my back they came back with finding OA in my right SI joint, with mild sclerosis and osteophytes. Also DDD in l5 and S1.
Maybe erosion isn't the correct word?
My dad has RA and psoriasis, which when I tell doctors that they raise their eyebrows. I also told them about my extended family with psoriasis and inflammatory arthritis (two aunts, one with reactive, one with psoriasis and undifferianted, both on my moms side).
I just felt like they weren't taking into consideration all my other pain that started right after my back started to hurt, and my nail changes.
My nails were pretty bad up until a few months ago, so of course they didn't work in my favour this time :/ and then I kind of think I sabotaged myself because I play down my symptoms.
He gave me meloxicam to try out for now.
I'm gonna for sure look at that sturdy... I love creepy hahahah
Not so much in the US, I don't know about Canada. The Europeans like nice neat little lists and scores. While the US is responsible for some of them (Modified New York for AS and the CASPAR for PsA) They are usually used for research purposes. Insurancae companies decisions for "pre-approval" are made based not on diagnostic codes so much as they are on "Chart Notes"
I'm not a rheumatologist nor ever had a desire to be one because there is so little certainty in their practice.The following is a pretty good picture of how things work in the US. The single most important thing here is to choose a Rheumie that can paint a good picture: (I think meg has got one as frustrating as the process is, look at that blue line and tell me that doesn't describe meg and her family.....)
Laura E D said:
Do you need a differentiated Dx in order to receive effective treatment in Canada/USA? I'm looking at an article that suggests differentiation of undifferentiated SpA (USpA) is a prerequisite, as prognostication is key (self-limiting vs aggressive destructive disease)
tntlamb said:
...If we were to start a pool, I put money that your final Dx will be U-SpA
Just talked to my dad, he's going to hopefully get his records for me. He didn't know he could get that information!
I asked him about his SI joints, and yes, he has arthritis in them. To what extent and what type, hopefully I can find out.
He was first diagnosed as having AS, but then it changed to RA. He also has had psoriasis for as long as I can remember.
I asked if he was RF positive or negative, and he doesn't know. Hopefully I see what similarities and differences we have, and maybe it will help us both out.
In retrospect, I think I may have played down my symptoms to the rheumy. I have a hard time "complaining" to people I don't know. I think downplaying symptoms is pretty common in my family. I'm getting my hubs to go with me next time for support.
I am aggregated for you! They want to see damage before treating you?? Not my rheumy… Nope. Might want a second opinion. And I took pics of all my swollen stuff daily to take with me and drew pics of my body and labeled the “hurts.” Taking you husband back is a great idea. I always do this because he interjects and backs up what I say. Or says things I forget. Keep a log that is easy to read. Pictures are good. Diagrams because they are pressed for time- not mine - he listens so carefully but I hear some are. I thought aggressive treatment before damage was the new norm? ESP with family history. Photos and responsiveness to prednisone were real convincers for my dr. The prednisone cleared my symptoms up almost completely. Then he added other treatments. But to wait and see… Grrrr… I’m just aggregated for you. Everyone else knows more ab it than me I’m sure. Keep your chin up and you are in my thoughts.
and then I kind of think I sabotaged myself because I play down my symptoms.