The saga of Arthur (my journey with inflammatory arthritis)

firestar
firestar Member Posts: 44
edited 4. Dec 2013, 15:25 in Living with Arthritis archive
The saga so far...

I have had 5 appointments and seen 4 different doctors and having seen the one this week seriously not sure what to do.
I was first seen last year after being fobbed off for nearly 11/2 years by my GP. I was really struggling with work and fought to get referred as I thought I might have fibromyalgia and thought it might explain why I was struggling.

So here is how Rheumatology has gone so far:
Appointment 1 We chat and I say I think I have fibro and Dr says maybe starts poking around and says 'hang on there is something inflammatory going on here'. I go for bloods, xray and MRI of hand and 3 months pass.

Appointment 2 I see another doctor and Bloods ok. I say still struggling and he says ' yes inflammatory arthritis but not sure what type, possibly psoriatic arthritis but as you have no psoriasis lets do an MRI of your sacroiliac joint. Sent of to try 2 weeks of 3 different NSAIDS.I have MRI done within 2 weeks but have to wait 4 months for rheumatology appointment.

Appointment 3 Same doctor as last time (yippee). He has no notes or info due to power cut (summer storms) so I get a cup of tea and come back an hour later. He says old inflammation on the sacroiliac and I tell him Naproxen worked best but of the 3 NSAIDS but upset tummy even with a PPI. He says we'll call seronegative spondyloarthopathy most probably psoriatic arthritis as I score the right amount on the CASPAR test and have nail changes but still nothing on the skin. He says take sulfasalazine for 3 months. No appointments available for 4 months. I get my GP to refer me to Physio and pain clinic. Meanwhile I struggle on with quite a few side effects and the existing pain and eventually burst into tears whilst at a physio appointment (very unlike me!). Physio talks to rheumatologist and appointment is made a bit earlier and I get see after 3 months of sulfasalazine.

Appointment 4 Seen by different doctor again. This one is a locum and nearly 2 hours late and as it is getting near 6pm I feel a bit guilty about having such a long list of question. But I ask most of them and he answers most of them and says carry on and come back in six months. He does not assess me and my questions were mostly seeking reassurance that I would not be in a wheelchair anytime soon. He sends me off for more bloods and says he wants to test for HLA B27 and run the usual batch of blood test so I get bloods taken. I received a copy of his letter to GP with a ? next to the diagnosis and a sarcastic comment about my asking about 'arthritis mutilans because I had read a book about the condition'. I was actually expressing my concerns about what damage may have been done by the delay in diagnosis (I had been having problems for 3 years prior to referral)
I email his boss (the consultant) and moan about side effects, lack of support other than prescribing and say I am not happy with how things are and not happy about medication and the next appointment being in 6 months time-so I get booked in to see him which happened this week.

Appointment 5 A couple of days before this appointment A couple of people comment on my new yellow look and I see my GP who confirms I have a yellow tinge and she runs a liver test and all is ok. So I see the consultant. He seems to have made his plan of action before I even sit down. Oh dear not a good start. I felt I didn't get to tell him anything about how I felt- despite being a bit yellow and nasty side effects I think the sulfasalazine has improved my peripheral joints but my back has been awful. The physio keeps hinting at ankylosing spondylitis and didn't get to mention that. in fact I struggle to get through a sentence without interruption. He confirmed I definitely have inflammatory spondyloarthropathy and said my pronunciation was very impressive- always nice to know! He went off on a tangent about medications and risk and how I cannot make a decision about it objectively but he can. He said stop the sulfasalazine and take NSAIDS (naproxen) and PPI for 3 months and come back in 4 months for follow up. He said he thinks I have fibromyalgia as well and said this is why I am struggling. Now I am not opposed to a diagnosis of fibro but I don't think I have it. I say this and he says but your sleep is affected and your in pain. So I try to point out sleep is affected because I wake in pain but did not get far. I think my arthritis is not controlled and that is causing the problem. I try to start this and the next thing I know is I am standing up trying to touch my toes so he can measure the movement- 4cms in case you are interested in the Schober test results! Oh and he mentions the HLA B27 couldn't be done because it was put in the wrong blood bottle.

I know I am under a very busy rheumatology department as my GP keeps on about their capacity issues. So now left feeling overwhelmed and confused. Firstly told to take a DMARD as best and then told to stop because DMARDS not good and neither is NSAID but it is the better option. I feel like I have 'trust' issues with doctors now and not sure whether to trust them. I think the psoriatic arthritis makes the most sense with it affecting my spine and peripheral joints but not sure what the recommended treatment is for that or what to do next.

So what now..
Option A
Cry in a corner
Option B
Do as I am told like a good girl
Option C
Get a second opinion
Option D
Put it out on the forum and see how typical this is and what others think.

Ok option D it is then.
Thanks for reading and sorry it is long but it has really helped getting it out of my head and I hope it helps others starting out to know someone else experiences.
Xx

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm too tired to answer properly, I apologise. I agree that setting it all out like that can be a good way to clear your mind of the confusions etc.

    My history is somewhat similar, I started in 1997 and went for seven years without any diagnosis, meds or any idea about what was going on with me. Eventually, in late 2000, someone took notice and referred me to the hospital. I began sulph in February 2002 and I am still taking it together with other stuff. Initially diagnosed in 2003 as having an inflammatory form of arthritis but that label changed in October 2006 thanks to a bout of pustular psoriasis on my soles and palms. Nowt else changed meds-wise. Seventeen years in and I have also aquired OA and fibro. It's not fun. DD
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I'm sorry your journey to diagnosis has not been smooth. Unfortunately, you are not alone in that. Unless you have a textbook case of a common inflammatory arthritis, doctors appear to be baffled, vary in opinion and take their time over diagnosis. Don't quote me on this but I believe that inflammatory arthritis in the spine tends not to respond to DMARDs and I thought it was commonly treated with NSAIDs and sometimes anti TNFs. Maybe have a chat to the helpline?

    All the best!
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Starburst is right. Distressing though it may be, unless you have classic signs, an inflammatory arthritis is just very hard to diagnose. Arthritis is not a 'glamorous' disease so it doesn't attract the funding of eg breast cancer.

    I hope writing about it helped a little. I often find that getting stuff down in writing helps me to clarify my own views.
  • firestar
    firestar Member Posts: 44
    edited 30. Nov -1, 00:00
    Thank you all for your comments.
    Sorry it was such a 'blurgh'. And yes helped to get it out and Iam seeing my GP to chat about options.
    Xx
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi firestar;

    My experience is similar, I have PsA which started in one wrist 8 years ago. I was finally diagnosed in 2013, three years after I had all joints and spine affected. I consider myself lucky because I could have spent several more years languishing under a fibromyalgia diagnosis. I'm now 11 months and on triple DMARDS and considering anti-TNF's.

    I know it's tough to take, but finding a way to remain positive and persevere with the system is the best way. Seek out 2nd opinions if you need to. At least your doctors are considering PsA for you; some people are stuck without their condition recognised as even inflammatory in nature. Seronegative inflammatory arthritides are notoriously sneaky because of the lack of inflammatory markers in bloodwork, or even swollen joints; there are still lots of GPs reluctant to even consider this condition. My GP showed very bad attitude when a rheumatologist stated his opinion about seronegative arthritis in my case; I found a new GP. PsA was considered a variant of RA (and considered mild) for many years and is only now getting the research it needs. Hopefully, things will improve as this happens and GP's become more aware of how serious it can be.

    Hang in there. I know it doesn't seem like you are getting anywhere but at least your docs are recognising your problems as inflammatory.

    Best wishes, I hope your talk with GP goes well.
    Anna
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi - firstly I too find that writing it all down helps unravel my thoughts so don't apologise for the length please! Being able to discuss what is going on is essential too I find and we can all offload here and it saves our friends and families from having to feign interest and disguise boredom and bafflement! :roll:

    I read your story keenly because I'm also feeling in a sort of bewildered limbo. I have a diagnosis of RA but am always half expecting this to change to PsA or Vasculitis or Fibro or Lupus - or on a really bad day, Scleroderma. The only person who makes any real impact on my usual state of confusion and denial is my podiatrist whom I saw today. He, once again, confirmed that a person who flinches badly when their toe joints are squeezed - same for knuckles - is a person with rheumatoid disease, as he calls it. It is a relief when someone spells things out and socks it to us straight I find.

    But to be fair I don't think rheumatologists can do this so easily because they have so many different conditions to bear in mind and such a vast array of symptoms and bloods and imaging to support or add further confusion to the mix. Good ones rely on your symptoms but also take time to think - like good detectives. So many of us have really complicated presentations rather than the classic ones.

    After my last rheumy apt (about number 5 for me too) two weeks ago I decided that it's all tolerable as long as I'm being taken seriously and don't feel dismissed. So I'm running with "mixed connective tissue disorder" currently although he didn't say that either!
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    He, once again, confirmed that a person who flinches badly when their toe joints are squeezed - same for knuckles - is a person with rheumatoid disease, as he calls it.

    I once walloped my orthopaedic surgeon when he fiddled with my very knackered TKR :lol:
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I certainly wouldn't wallop my podiatrists SW -in fact I think I'm developing a crush on the man :oops: He is the only person I feel talks any sense and... oh well I'll save the next bit for a new thread I think...but I will just say that lambswool comes into the full story. Mmmm. Mat x

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