An extremely frustrating appointment

Well I had my Rheumatology appointment today, many of you who follow my blog will know that this was my first appointment in quite a while and so I have been quite stressed about it.

I was secretly hoping that I would get a diagnosis but if course that didn’t happen. Lots of people suggested writing a list of things to talk about, including symptoms, and to take pictures both of which I did but my Rheumy asked if she could keep them right at the start of my appointment so I didn’t have anything for my reference… Thankfully I wrote quite a bit on that sheet so she can see all of my symptoms.

She examined my ankle, knees, toes and hip and we spoke briefly about what an X-ray of my ankle had showed last year (an anteater formation which is basically fusion of the bone) and whilst she couldn’t see the X-ray she read the radiologists report which said the finding were normal?! How can the findings be normal if I have fused bones in my foot? So she is going to try and find the actual x-ray to have a look at… This is the unfortunate thing about being seen by 2 separate NHS trusts, there is hardly any communication between the two… I also asked her about my ligaments which were tender to touch but she didn’t say anything about that… In fact she didn’t say much about anything.

We discussed my blood tests, apparently all of my inflammatory markers are in range except from one which is slightly too low… How can it be too low? Isn’t that a good thing? But she said not to worry about that. She also said that an antibody has shown to be positive but not significantly postive… And when I asked her which antibody it was she just explained that it is linked to arthritis blah blah blah blah…
It’s so frustrating that she doesn’t just give me a straight answer!

I also told her about my cousin who is in the process of being diagnosed with psoriatic arthritis and she said it was highly unlikely that I had it because my gene marker [she means HLA-B27] was negative, but of course this doesn’t rule anything out…

I didn’t even get to ask about a new NSAID because the appointment was going so badly and my Mum was being a little bit of a nightmare so I just left it…

So the plan is to go back when I’m having a flare, which could take a while since I haven’t had a full body flare in quite a while, just mini flares… The vampires also took 7 vials of blood which wasn’t too bad (except from where I bled all over the nurse) and she is going to phone me with the results and give me her game plan…

Thankfully my physio is phoning me tonight so she might be able to help me on the points that I didn’t get to discuss with my Rheumy… My main concern right now is how I am going to walk around New York in the summer?! I can’t walk 3 miles without issues so how am I going to walk around NYC?!

Overall it was a very frustrating appointment and I left with more questions than answers…


4 thoughts on “An extremely frustrating appointment

  1. There are little tricks everywhere to dealing with doctors–and often, it takes a few appointments to accomplish anything, in my experience, anyways. If after a couple rounds things don’t change, I’d suggest [if possible] attempting to switch to a new rheumatologist. Most importantly, it’s probably most effective to not go in with any more than your top three must-address pieces, and then you don’t spend time dealing with the less-important stuff until later. It also varies office by office [at least in Canada], but calling ahead for lab results if possible is probably a good idea, too–the more educated you sound on the phone, the more likely they are to give them to you, though some staff won’t [I’m at the point with my doctor where her assistant knows me well enough to know she can leave my Hb labs on my voicemail, though they’re mostly not supposed to do that].

    Also, if you haven’t, hit up my friend Britt, @hurtblogger on Twitter–she might have some thoughts for you.

    I have very similar posts on my old blog, except in reference to asthma–but as you keep persevering, it does get better–and if it doesn’t after 3ish appointments, it’s time to address that and go elsewhere.

    1. Thanks Kerri 🙂 I appreciate it… It think it’s so frustrating because I’ve waited 17 months for this appointment and there is no saying how long I will have to wait again… I would usually only have 3 things max to discuss but it’s difficult to do that when you have 17 months of issues to discuss…
      I’m hoping my Physio will save my sanity!
      And I know of Britt, I’ve been following her blog for quite a while and I follow her on Twitter and IG but I don’t think I’ve spoken to her personally.

  2. Sorry to hear about your appointment. 😦 Is it possible to get a referral to a different rheumatologist? Sometimes the change of doctor can make all the difference; I used to go to one hospital where every doctor swore I was perfectly healthy, but when I was seen at another hospital I was immediately sent for tests and to rheumatologists and other specialists. I hope something can work out for you, hopefully soon!

    1. Thanks Elizabeth… I think I’m going to end up seeing another Rheumy in the near future since I’m moving away for university… This one still believes me thankfully she is just very confused, but then I am a confusing person 🙂
      Hope you are well!

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