2nd opinion-finally a clue

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mamadeesix
mamadeesix Member Posts: 83
edited 19. Apr 2018, 18:33 in Living with Arthritis archive
So I ended up keeping my 2nd rheum. appt. to get a second opinion. I'm glad I did.

She really listened, unlike the last guy. And seemed interested in finding out the why. I told her the last guy diagnosed hip bursitis and gave me an injection and a week's worth of meds. Some bloodwork, but no x-rays.

So we did x-rays. Hips, hands, and feet. I was expecting to find nothing. I was surprised. She said I had arthritis in my feet and hips. Hands were ok. I assumed osteo. She said she didn't think so. She said there was bone erosion and....I don't know....tiny holes or something??? Not sure about that part. Anyway, she suspects autoimmune! She said there is def. joint damage and we need to figure this out. She is running more detailed bloodwork. I asked what if it comes back ok. She explained the whole sero-negative RA thing. So for now, she wants to do a 15 day trial of prednisone.....to see if I respond to that. If so, that would be another piece of the puzzle, pointing to inflammatory.

Thank goodness I went. I almost didn't. I don't feel so crazy after today. Actually something to show why I am hurting.

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  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    To be fair, osteo would hurt too :wink: but I'm glad you're getting more tests and, hopefully, more certainty. At the very least you seem to have more confidence in this rheumatologist and that has to be a good thing. I hope the picture will become clearer soon.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mamadeesix
    mamadeesix Member Posts: 83
    edited 30. Nov -1, 00:00
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    Oh, I do not mean to downplay osteo at all. I know it hurts! But the last guy didn't even see if I had osteo in my joints. He only diagnosed hip bursitis and left it at that.

    Not that hip bursitis doesn't hurt. I know first hand it DOES! lol.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    We are always at the mercy of others' opinions be they professional bods or not. Rheumatology refused me at first, trying very hard to palm me off on orthopaedics, but I was determined to be part of the gang. :roll:

    Diagnosis is dependent on so many factors: presenting with the ideal symptoms in the correct places, bloods which reflect how we are feeling, doctors being interested enough in us as a patient rather than in themselves as experts, none of which applied to me. It is a straightforward process for some but harder for others: life in a nutshell. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mamadeesix
    mamadeesix Member Posts: 83
    edited 30. Nov -1, 00:00
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    I think after reading many stories, and talking with those I know with arthritis issues, it's not a fast, straightforward process for many.

    Had I accepted the opinion of the first rheumatologist, I would continued to think I just had osteo in maybe a toe and one knee and had hip bursitis. All the while , suffering multiple weird joint and tendon pain and other symptoms....fatigue, etc. and thinking I was imagining things or making too much of it all. All without so much as one x-ray.

    Any further look into things would have taken much longer, because he had me half believing I was an idiot.

    As it is, I am a persistent person and I know my body pretty well. Or I did until the last 6 months, when it felt like I moved into someone else's!

    No matter what this new doc. comes up with ultimately, I trust her and believe she wants to help me figure it all out.
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Mamadeesix your new rheumy sounds fab. Who is she? Your story sounds so much like mine. I was diagnosed with OA in both knees in my 20s. I’m now 40 and just don’t believe it is as simple as that. Since giving birth I have had scalp psoriasis which the doctor wouldn’t even look at properly and now I get regular itchy rashes on the back of my knees and elbows. My Mum, although not diagnosed has badly misshapen fingers and my dad has psoriasis and we know that PsA runs in families. I’m desperate to get a proper diagnosis because just not knowing or being able to explain it is so draining.
    I’m so glad you are getting some proper tests done and hopefully answers are coming soon. Good luck.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    JJE239 wrote:
    I was diagnosed with OA in both knees in my 20s.

    This might / might not help https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039183/
    Sorry, I'm in a big rush right now.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It's hard keeping track of who has seen who, I apologise for not remembering your full story. :oops: If you have seen a rheumatologist did you tell them about the psoriasis? I wasn't able to tell them about mine because I didn't have any, that arrived nine years after the arthritis began and finally led to my PsA diagnosis (though they still write me up as having RA, lazy suds).

    Both the maternal and paternal sides of my family were troubled with auto-immune issues but my parents were unaffected. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Would you mind sharing your symptoms when you have a flare up?
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    PS my psoriasis also started many years after my OA diagnosis. I think it was triggered by child birth
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I apologise for my lack of clarity, I knew what I was on about :wink:

    I was born in 1959 with eczema and developed asthma aged seven, both courtesy of my Ma's side of the family. The auto-immune arthritis began in 1997 but wasn't recognised as such until 2002: I was given the general classification of auto-immune inflammatory arthritis and began the meds. The appearance of the psoriasis in 2006 (courtesy of Pa's side) led to the dropping of the medical penny but nothing else changed. OA was diagnosed in 2011, I have no idea how long that was going on for but was definitely caused by the PsA joint damage. I've always viewed the psoriasis as a natural development of the eczema.

    My OA doesn't flare, it is aggravated by my overdoing things, eating too many pickles or the weather: I can control the first two which is why I prefer it to the PsA. The pain levels increase, there may be some inflammation but it soon fades to normal within a few hours. When the PsA flares the tiredness that goes with it is overwhelming, often to the point of nausea. I can tell it is active despite the meds because my skin breaks out so Dovobet is required. These episodes last for weeks or sometimes months, not hours or days. I occasionally have some inflammation with the OA but it subsides, with the auto-immune it solidified but the meds control that side of things beautifully. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mamadeesix
    mamadeesix Member Posts: 83
    edited 30. Nov -1, 00:00
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    Thank you, dreamdaisy, for telling your story. It's never a straight line to figuring this stuff out, is it? It must be even more confusing when one has OA and an inflammatory arthritis. It seems that isn't so uncommon.

    I know I have osteo arthritis in my knees....that pain has been around for a few years now. And it def. hurts more when I do more. Heck, if I do much of anything these days. Other things just hurt for no reason. Like a few days ago, my heels starting hurting. Sometimes just heels, sometimes arches, comes and goes. But it's new.

    JJE239, I am also wondering if you have seen a rheum and if they know about the psoriasis.

    As for me right now, I am tapering down on the prednisone, which is AWFUL. I felt great on it for about 6 days......pain much decreased and morning stiffness practically gone. And energy! I was getting things done again! Then, when I started tapering.....OMG. I am exhausted. Dizzy. Half nauseous. Spacey. Did I say exhausted??? I cannot wait to be done with this. It was a test of sorts, to see how I reacted to it. Well, it worked. But I am paying for it now with horrid withdrawals and returning pain. And now heel/foot pain. So not sure what that all means. I mean, couldn't it have worked if all I had was OA, also?
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Thanks everyone. Your stories and advice are really helping me to form a picture. I’m seeing the doctor on Friday for another referral to rheumatology. Last time I went he looked at my Xrays, confirmed advanced tricompartmental OA and essentially said nothing could be done as I’m too young for TKR. However that was before I knew anything about PsA. Now that I’ve done some research and put it together with my family history, I’m fairly convinced this is what I have. Random skin rashes, loss of appetite and weight loss, the intolerable fatigue and aches in my fingers and toes which I’d always put down to playing the piano and having high arches. Put together with the fact that my mother almost certainly has undiagnosed PsA with totally misshapen fingers and my father has psoriasis. I know it won’t change the pain or the deterioration but I am desperate to have an answer and explanation to why I can’t get through the day without wanting to collapse in a corner. I could never come to terms with the OA diagnosis because who has wear and tear in their 20s? I was sporty but certainly no ultra marathon runner. I’m praying to get some clearer answers.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    JJE239, PsA traditionally begins in the smaller joints such as the fingers and toes so that, the tiredness plus a possible familial history is enough of a reason to refer you to rheumatology. I hope your GP doesn't fob you off, be polite but determined! GPs know a little about a lot, you need someone who knows a lot about a little.

    Mama, the more one does the more it hurts is the way of things when arthritis of any kind has moved in. The response to the steroids would suggest something auto-immune is going on but with around three hundred auto-immune inflammatory conditions diagnosis can take time. As you have had the luxury of having a body that caused no trouble this must be difficult - mine has always worked against me, causing immense physical discomfort and occasionally near-death so for me this dross is more of the same. I was never confused but I was astonished to discover I had OA as well: I naively thought that one could only have one kind of arthritis. Twerp! :lol: It is indeed the gift that keeps on giving, giving, giving whilst taking, taking, taking - but only if we let it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Seeing the GP tomorrow morning so fingers crossed I will get a referral.
  • mamadeesix
    mamadeesix Member Posts: 83
    edited 30. Nov -1, 00:00
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    Good luck!