Making progress on a diagnosis - UPDATE 5/7 test results


Well, the blood work is back, and everything including the genetic marker test is negative. This is good, but it's also frustrating. She's a GREAT doctor, but she's unwilling to make any sort of diagnosis until there's some kind of direction she can lean towards. She wants me to see a dermatologist next to potentially rule out/in Psoriatic arthritis, but that's about all I can do.

I can feel whatever this is changing on a weekly, almost every other day basis. After I finished posting the original post, I began experiencing prolonged periods of stiffness in my left knee, followed the next week by the sensation of burning. The burning is pretty much around the entire knee cap, and somewhat extending to the areas around that. Now, the right knee has begun showing similar burning. I've yet to find a trigger, however standing too long, and sitting with my knees bent in a certain way tend to make it come out more prominently.

To say I'm frustrated and disappointed is an understatement; I was pretty sure I was closing in on something...but Now I'm back to just guessing and hoping. It feels like whenever I begin to "accept" what's happening, my symptoms worsen a little more in some capacity. It's causing me to relapse on a lot of hard work I've put into my mental health, and probably making this entire situation worse.

I just have to keep myself positive somehow...somehow.

Thanks for listening to me vent. I know my problems are basically insignificant in comparison to a lot of onstart tales, but you folks are basically all to talk to about this right now, and I appreciate the heck out of all of you and how strong you all are.

Hey everyone,

Last I wrote, it was about how I hadn't been diagnosed yet and struggling to find a doctor. Well, after one terrible rheumatologist and another primary visit, I've found a great rhuemy that's right out of college, and knows what to look for. I still have no diagnosis, but we're doing more blood work (this one including a new test for me; checking for a genetic marker, whose name escapes me), and she's promised me that we'll figure out what this is.

She said she's hesitant to say that I'm positive for RA based on how inconsistent my pain/stiffness/etc are, so we're looking into other avenues as well (psioratic arthritis being another culprit). I'm hoping that whatever this is, RA or otherwise, I'm not getting to it too late. This makes 7 months now with symptoms that have been ever so slowly progressing.

Anyone else have similar issues?

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12 Replies

  • It took more than 20 years for my diagnosis, unfortunately. When my back pain originally started, I was told that I had the spine of an 80 year old ( I was 28!) and that I would simply have to learn to live with it, which I did, albeit sometimes in the most terrible pain. After visiting my GP for a period stretching over 6 years complaining of painful feet and hands, I wasn't diagnosed until I eventually went abroad. I was first diagnosed there with sero negative RA, then came back to UK where it was revised as PsA although I don't have psoriasis but my son does, then last year after I was diagnosed with Lymphocytic Colitis, I was finally diagnosed with Spondyloarthropathy. Im now injecting Humira. You just have to be persistent. Clemmie

  • That's great - having a rheumy you get on well with is important. I imagine it's the HLA-B27 gene that she's testing for as that's associated with inflammatory arthritis, particularly Ankylosing spondylitis. Although it's good to be treated within months of the disease emerging, it sounds as if your one is still developing so very early days. With some people it can take several years for the disease to actually get going and establish itself.

  • When it first started, I thought it was carpal tunnel. I've been very lucky in terms of potential disease progression, as the pain in my fingers has only really started up within the last couple of weeks. My knees are getting a little on the rough side, but I'm hoping it's from something else , as I have other problems in that department lol.

    and that's definitely the gene she mentioned.

  • I've been having symptoms since last September. I'm starting to feel it in other parts of my body then just my hands and feet. I'm also noticing that my knees are getting achy now and my shoulders as well.

  • Whatever mine is, it started with thinking I had carpal tunnel, so mainly the wrists and a couple fingers. Now it's definitely in a few toes and the knees. Keep strong and keep trying to get it diagnosed :)

  • Great to hear you found a doctor you can trust and talk too, that is the first step.

    Most people with RA or any of the many forms of arthritis take a long time to diagnose, even if you have positive blood markers. The disease can mimic a number of other diseases, and the symptoms can change daily. One day you can't walk...the next day you when you see a doctor you may be having a really good day, and he may not see your symptoms as you feel them.

    So it is not unusual to take years to be diagnosed, as you can see from peoples responses, if you are only seven months in, and already at a Rheumy, then you are very fortunate, not fortunate that you may have RA, but fortunate that you have such prompt medical care from a specialist. Many of us suffer for years before we are sent to see a Rheumy.

    All my blood markers are positive and it took me over three years to get a diagnosis, although I know from my symptoms, I have had it for about five years prior to diagnosis.

    I hope you doc gets it figured out, as early treatment is always the best course of action with this disease.

  • Thank you!

    and I do feel fortunate in a bunch of ways. I'm grateful for having doctors that actually listen to me and push me towards specialists. It took a few tries, but that's life in general Lol.

  • I was diagnosed last March after 2 consultants did ultra sound scan which showed inflammation. My bloods were negative but they started me on DMARDs telling me it was Sero neg RD. I had problems with the first 2 DMARDs they gave me and I have not taken anymore. However last week I went for an appointment at rheumy clinic and was told by a registrar that as the drugs arent working and bloods show no RD factor it isnt inflammatory disease. My last blood test was 6 months ago and I had only tried 2 DMARDS? I feel worse now than I did a year ago when diagnosed. My hands, shoulders neck, back, knees and feet are extremely painful all the time and hands and feet constantly swollen and stiff. I also have osteoarthritis in my knees hands and feet and the registrar said that the swelling and pain is that but she hadnt checked my notes or taken account of anything I said even the fact that 2 members of my family had sero neg RD. I also have Sjorgens, sleep apnea and GERD. I know it sounds daft but this latest thing has depressed me. If it turns out not to be RD then I will blessed but for 2 consultants to say it is and for me to try to get my head around it then to be told it isnt that after all is messing with my head.Next for me is to see GP and ask for a second opinion. Gentle hugs Joolz.x

  • Hiya, I only have RA, (so far, touch wood), but I had similar results & I was expecting to go back to my GP for a second opinion, but my RA consultant had a different approach. My blood tests done 4 days before the appointment showed me as RA negative & no markers for inflammation. My consultant said that is good as it means you are still in the early stages of RA. I had already been taken off methotrexate following a previous nurse appointment as there was no benefit, (but lots of side effects). He allowed me to rattle off a list of joints I am having problems with & without pausing for breath I described how difficult walking is getting. He then said maybe the methotrexate had not worked as there was no inflammation for it to work on, but try two weeks of steroids. If that makes a big difference then there is inflammation a DMARD can work on & here is the prescription. And he was right. Two weeks on 20mgs of predisolone had me almost skipping. As soon as it stopped the RA rapidly kicked back in & I was almost back to where it was when the Sulfasalazine seemed to take effect - hooray, hooray, hooray! What's next I don't know - the clinic letter is in a huge backlog - & I've only got as far as getting a repeat prescription. I notice you saw a registrar, so maybe you need to see one of the original consultant who said RA. Good luck & gentle hugs, RAinK

  • Thank you for your reply RAink. Trouble is I havent seen the same Rheumy twice and only seen the nurse once in a year. I wasnt even told at the beginning that there was a helpline if I had trouble, I learnt that from a lady at my acqa group. Do the steroids put weight on as I already have a problem with that? Joolz.x

  • Hiya, I had the same problem with the helpline & had to find it myself, (it turned out to be the consultant's secretary). Luckily for me you get allocated a specific consultant & not a team &, while initially I was not happy with him, I now think he's great compared to so many I hear about. I wonder if you can phone a specific consultant's secretary where you are & request an appointment with that specific doctor? Yes steroids can make you put on weight & make you feel hungry. But 2 weeks was ok. It is long term use if steroids that causes problems. Good luck, RAinK

  • Thank you. When I see my GP on Saturday Im going to ask for a second opinion and if not possible ask if he can refer me back to the first consultant I saw who made the original diagnosis. If I dont get anywhere I will be putting a complaint in as I havent been helped at all in a year. The only help I have had is from this site and lovely people like you. Gentle hugs Joolz.x

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