It took me a while to come to terms with, but I am thinking the probability of my problems being down to psoriatic arthritis are very big.
Shortly summed up, I have pains in anything linked to the spine, so that includes
hips (stiffness is worst, the pain I can live with)
lower spine (real bad at times, but I do have a large disc prolapse there, and that only seems to kick in when I get stiffness and pain from the joints, and then I get sciatic pains and numbness also)
midspine (that has been my best area so far actually)
top of neck (very bad)
additionally I have severe pains in the jaw. Those affect my ears/balance too when at their worst.
I always noticed being worse when stressed (wich is a bit kinky, since I literally thrive and feel a rush under stress. I love it!
) That seems to go along with the psoriatic family, as I understand.
The other problem with me not getting a diagnosis can very very easily be explained with PsA as well. No blood tests show arthritis:
No, they wouldnt, would they? The criteria for PsA clearly states negative for the AS gene marker, and no rheumatic factor. Actually only slightly raised CRP, and is some cases anemia will usually show up.
Visual signs: well, if it hits your fingers or toes, or swells up a knee or elbow it would be easy to spot something going on. When it hits joints in the spine, and the jaw?
-Not so easy to tell then, is it? If I had huge and visual psoriasis it would have been picked up on by the rheumy I saw, or the GP, but neither them or me knew I had it until the skin doc diagnosed it.
Too low Vitamin D levels, could they have given anyone a clue?
-Well....maybe, if I had a sharp GP he would look into it to see if anything else was going on, like anemia. But when he is clueless and still convinced anxiety is my only problem, he just wasnt going to order that tested, now was he?
So here I am. still undiagnosed. But I am quite certain I hit the marker at last.
So how do I go about getting the diagnosis then? -It matters as in my country the healthcare is actually quite good AND free of charge, including free phsyical therapy, free medicines and free treatment trips to warmer countries, if you have it severely and actually get to a diagnosis.
So how to make them discover what is so hard to discover?
Well, I have a plan.
I am going to ask to be tested for anemia. I have no clue if I have it, but due to fatigue, and lately noticing how I will not run out of breath in stairs and uphills, but actually feel like I get acid legs from it. like I just dont have the power needed....well it seems prudent I should have that checked. It being a diagnostic criteria too wont hurt if it should turn out I am. I am actually going to tell them why I want that checked, and that I would like that and CRP checked with specific values and in regard to psoriatic arthritis with a small series of tests with some weeks between.
I will also be asking for MRI of my complete spine, including neck, and the jaw as well. I need anything visual that can show swelling, inflammation, degeneration or damage due to arhtritis for a diagnosis. It is VERY improtant I get it done in any case, as I have had a lot of neuropathy and nerve involvement the last half year. PsA can actually lead to dislocations in the neck, and I want answers to why my nerve system is involved.
And I will be asking for a new referral to a rheumy. Last time I saw one they did not know because I did not know that I had Psoriasis.
The last problem has me a little more troubled as to how I deal with though. I have had a lot of stomach problems. They got tons worse after I tried Voltaren for 6 weeks, but thats now almost half a year ago, and I still have problems. diarrhea on and off, acid, heart burn etc. I got a great tip from my homeopath; 1 teaspoon of Natron powder in a galss of water every day. It helps a lot. But it still feels like stuff is not passing as easily through as it should, up to the point that 3 or 4 times I have actually got some sort of spasm inside my stomach on the left side, almost behind the lowest rib. It feels like something big suddenly moves through a very narrow hose. yeah yeah, I know it sounds weird, but it actually does. The fist time I actually thought my heart had a huge spasm, imagine that! And I have had a colonoscopy, so it's not the Colon. must be the small intestine I suppose? I will take it up with the docs too, because I wonder if it can be related.
So, does my plan sound reasonable? anyone with a working knowledge of PsA that has any other hints as to get this moster to be visual to a doctor: please tip!