Another appointment without much luck...

[JamesPlagued]

Good morning,

I had another rheumy appointment the other day to try and figure out what's going on with me. Since the last time I went, pain has increased in my index finger, and thumb on both hands, and i find other parts of my body more affected as of late. According to her, the way I'm describing my issues is inconclusive to RA, nor does my blood show any markers. We thought it might be PsA , but a dermatologist confirmed that my skin condition is not psoriasis. However, she did call for an X-ray of my feet and knees, to see if it would give us any clues about what's going on, and she discovered that I have osteoarthritis in both knees, possibly in my feet as well. I'm 29, so this news came as a punch to the gut to me, not to mention that the idea of having something like that and potentially still having an auto-immune disorder is just overwhelming. I have another appointment in December, although I might go in earlier to discuss options for the osteoarthritis.

I've decided that I'm going to be proactive about this, and not wait. I've begun to slowly but surely weed out certain food groups (Dairy right now, than I'll begin cutting back on gluten/wheat), and I'll be starting a diet to try and heal my stomach, and reset my Ph levels. It's a diet that helps a lot of people with psoriasis and PsA, so in theory, it should provide some relief for this as well.

Have a nice morning, everyone.

[Hidden]

You hear of people with RA who've had a devil of a job getting a diagnosis. It seems to me that PsA can be even more tricky in this respect, probably because blood markers are very often normal and because the one thing that can clinch it - current psoriasis or a history of psoriasis - may be lacking. I am having the mother of all psoriasis flares ..... nearly 4 years after my PsA diagnosis.

Have you had swollen knees at any time? PsA (and RA) can lead to secondary osteoarthritis in affected joints. And, especially in knees as I know to my cost, this can be exacerbated by any muscle-wasting caused by inactivity. For all I know you may be a complete exercise freak, but if you do sometimes avoid exercise I would strongly advise getting moving on a regular basis not too full-on perhaps, but not too gentle either.

Do you have any 'dodgy' nails at all? Psoriasis often shows up in the nails and the way it affects them is very various, I wouldn't bother googling 'psoriatic nails' as any nail changes might be significant.

If you continue to suspect that you have inflammatory arthritis then you will need to pursue a diagnosis. Even if you respect your current rheumatologist and dermatologist it might be necessary to ditch them and find other practitioners if they keep drawing a blank. That can be tough. But I'd say that most people I know with PsA have had to ruthlessly move from one doctor to another to get diagnosed.

I hope that you do 'just' have osteoarthritis, painful and distressing as it must be, especially at such a young age. I bet you could control that to some extent with healthy living. But inflammatory arthritis can potentially affect the whole body and in my opinion it does need treating with medication. So keep searching for an answer you are absolutely in agreement with. I wish you good luck.

[JamesPlagued in reply to Hidden]

I've had no visual swelling what so ever, which is part of what's throwing my doctors off so badly. No nail issues per say, although the nail on my left pinky toe is rather odd; it's sort of larger than the others , I guess is the best way to describe it. No indentations in the nails, though.

I will give her one more shot , but you're right, if there's no response after this, I'm going to need to pursue it elsewhere with somebody that may be a little more aggressive in their methods.

I get the redness , and warmth in my joints, so that's what's leading me to think it's more than just osteoarthritis. The knee situation sucks, but I'm not shocked; I was born with a clubbed foot, which lead to all sorts of issues with balancing properly , so it's entirely possible it was just coming. I was hoping for it be a little later though.

Thank you for your comment, it helps

[earthwitch]

If they were thinking spondyloarthritis (which PsA is), then did anyone do a sacroiliac joint xray? That's the main screening test for ankylosing spondylitis, though it may not show up anything much until the disease has been active for 8-10 years or more. Also if you are having gut problems, something like 30-40 percent of people with ankylosing spondylitis also have inflammatory bowel diseases.

If you are keen to do the self help route, see if you can find a copy of Carol Sinclairs book "The IBS low starch diet", or join one of the big international spondyloarthritis forums that have a diet sub-forum (kickAS.org or the spondylitis association of america)

[JamesPlagued in reply to earthwitch]

She originally thought I might have had PsA, but with the negative skin test, she's steering away from that diagnosis.

[helixhelix]

At 29 it must be tough to be given such a nebulous diagnosis, so good for you to start to try to take back control. I think healthy living with diet & exercise can really help hugely - if I get lazy then my knees & back tell me about it pretty quick as i need the muscle to protect the joints affected by OA. Ask also to be referred to a podiatrist, they can help limit damage to your feet, as well as Austin to get the right exercise for your knees. But don't forget sleep is pretty important too so if you don't have good sleep then try to work on that too (the horrible phrase is sleep hygiene, which I just loathe).

But like postie I wonder whether this is secondary OA from flares of RA or PsA. And in which case I would think you may also need drug treatment too.

[JamesPlagued in reply to helixhelix]

It's certainly not what I expected at my age, nor how I planned things to go, now that the bad is finally turning to good...just bad timing. My rheumy wants to try cortisone shots, so I guess I can do that for a bit, but I'm pushing her about finding out what's going on with the rest of my body. I think this next visit is the last chance before I look elsewhere.

[flow4]

I've got a similar uncertain diagnosis James, and I'm having various tests to check for inflammation - I had an ultrasound of my hands last week which showed degenerative changes but also some sinovitis, I'm waiting for the results of a blood test for the gene HNA-B27(?) which is a marker for spondyloarthritis, and I'm waiting for an MRI of my SI joint... Meanwhile, my formal diagnosis is 'just' aggressive early onset multi-site osteoarthritis, probably caused by hypermobility syndrome, plus possible systemic tendinopathy, plus possible fibromyalgia (I'm not convinced!). I know that sounds like enough to be getting on with, but my GP and I agree my symptoms don't look like 'normal' osteoarthritis, and things got suddenly much worse about 3-4 years ago, rather than deteriorating gradually. And my dad had RA, so I am suspicious... I've already had a hip replacement and my hands and feet are deforming... I am scared by the thought that I'll just continue falling apart, because my diagnosis is uncertain and I'm untreated. And I feel too young for this at 49, let alone 29! So yes, push. Do your research and talk to others here, and learn what you need to know to be able to fight for the diagnosis and treatment you need!

[Hidden in reply to flow4]

One thing that impresses me about you is how knowledgeable you are - you have done your research and will not just take any diagnosis lying down and that's really important.

I'm another person in a state of limbo although I have a working diagnosis of RA and have tried four disease modifying drugs to date - all of which have given me severe reactions of one sort or another.

Now I am just on a low dose of steroids and under a new rheumatologist who is reassessing me for all types of connective tissue disease as well as Raynauds and sticky blood (Hughes Syndrome).

I know PsA and AS can both cause severe osteoarthritis - often in knees - and also can take much longer to diagnose because of negative blood markers. I don't think I have one of these myself because my OA is age related and not aggressive.

I did have clear synovitis for about two years but don't anymore. I suppose at 52 I am more concerned for my organs now because I expect to have some wear and tear as a post menopausal woman. I think the main thing is to learn as much as possible and if a diagnosis doesn't sit right with you after you've lived with it for a little while then continue to push for answers. I did my research and found a rheumy who has a special interest in Vasculitis, lupus, Scleroderma and Sjogrens. He is a rheumatologist so he also knows about RA and Spondyloarthritis of course. He may or may not come up with answers - and if he doesn't I may or may not stay with him. I'm also presently wrestling with the idea that there may be no answers for me and seeing how this sits.

Best of luck with your quest. You don't appear to be overweight in your profile pic so at 29 I would be querying the idea having severe OA in both knees too.

But meanwhile keep up eith exercises as Postle says - very important with Spondyloarthritis and OA I believe - as are dietary adjustments. So keep fighting for more information and testing because there are some potentially effective disease modifying treatments you may well benefit from and the sooner these are started the better.

[JamesPlagued in reply to Hidden]

I'm not massively overweight, but too heavy, so that's the first step i'm taking. I've been doing stretches for my knees every morning, and night, and that seems to help here and there with some things.

I do have "hypermobility" in my joints, which my doctor found interesting, and that my joint stiffness generally tends to appear more frequently during the day, amidst activity rather than being more problematic during periods of inactivity. My symptoms are so all over the place that I can definitely understand why it has been such a challenge for her, and other doctors I've seen. I would love, love for this to be circulatory system related, or some kind of neurological issue...but in my gut, i feel like it has to be an auto-immune disorder.

Who knows, maybe life will stop being a jerk for a little bit and give me some positive answers

[Hidden in reply to JamesPlagued]

Do you get physiotherapy offered wherever you live (I've got it into my head hat this might be in the States)?

My sister is in her 40s and has severe OA in her knees and was offered a course of physiotherapy on the NHS aa soon as her GP saw her X-rays. My niece, her daughter, is hypermobile.

So I would have thought that doing a bit more exercise and being less sedentary would be an important part of your self management. I think exercise is pretty key to helping with both conditions and also with RA/ inflammatory arthritis. But It would have to be the right kind of exercise which is where a good physiotherapist comes in.

[JamesPlagued in reply to Hidden]

I wasn't offered any sort of physical therapy, although I didn't get the diagnosis from my dr, but rather her nurse so it's possible some wires were crossed. I took it upon myself to look up , and start a routine i do twice daily to help with positive muscle growth.

[Hidden in reply to JamesPlagued]

You still don't say whether you are based in the UK or not James. If so physiotherapy should be available to you on the NHS. If not or if you can afford to I would definitely have a few sessions with a physio who specialises in arthritis because this has really helped my sister and my niece and they will know what kind of exercises you should be doing for your conditions.

The wrong ones or exercises done the wrong way might be doing no good at all or even some harm so it's a worthwhile investment I would say.

[JamesPlagued in reply to flow4]

Good luck, Flow! The hypermobility thing is interesting, because I too suffer from that in my hands, but I was never tested or checked for it in my knees. I would be curious if there's a direct correlation between the two.

I was shocked with my osteoarthritis diagnosis, because while I do have a slight disability that can lead to unneeded wear and tear, I do tend to live a generally sedimentary lifestyle, so they shouldn't be getting abused to the point of degeneration that I apparently have; the pain really kicked in just all of a sudden a couple days after she told me. Lot's of burning mostly, but discomfort as well and popping knees when I walk. Before that, I had some occasional pain, but I just never assumed it was THIS.

Who knows...maybe we'll get some positive diagnosis soon so we can rest a little easier

[flow4 in reply to JamesPlagued]

Have you seen the diagnostic criteria for hypermobility syndrome, James? They're listed on the webpage here: hypermobility.org/help-advi...

There is a known link between hypermobile joints and early onset osteoarthritis. Put simply, if your joints are more bendy than they should be, they wear out sooner... If you have the *syndrome*, rather than 'just' bendiness, you can have all sorts of other soft tissue problems too, including often IBS problems and blood pressure issues. Lots of the symptoms are also symptoms of RA and other inflammatory conditions. And unfortunately, some of us seem to have both... Like you say, it's not surprising health professionals can struggle to differentiate and diagnose.