Waiting... waiting ...

Toots
Toots Member Posts: 483
edited 17. Mar 2014, 14:51 in Living with Arthritis archive
Hi everyone! Sorry I went MIA for a bit, I needed some time just to get my head together and while everyone here is so supportive, I felt like I was concentrating on my health (or lack of) too much. Hope you know what I mean. You've all been in my thoughts though, rest assured. Hugs to you all x

After my rheumatology consult in December, I waited for my MRI date - had scan end of January. Being a patient patient (ha!) I thought it best to leave it 2 or 3 weeks to hear anything. Week 4 and still nothing, so I called the hospital on Tuesday, only to be told that communication had been sent electronically to my doc on 31st January!

Called doc surgery - nope, we haven't received anything. Sigh. Got their fax number and called rheumy secy back and she said she'd fax it.

Called doc surgery again today - still maintain they have received neither the electronic nor fax copies. Bigger sigh. :roll:

So I'm off to call the rheumy secy again in a moment. Blooming annoying but what's puzzling me is that surely if rheumy wanted to see me again, I'd have heard by now?

Will update once I know more. Hugs galore x

Comments

  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    What a frustrating time, Toots, and no apology needed. I quite agree that concentrating on the disease is not good.

    I'm left wondering if it might be worth your checking that Rheumatology have your GPs name and fax number correct. It seems strange that two faxes have failed to arrive.

    Good luck, Toots, and I'm sure the patience you've required to deal with this will come in useful for dealing with arthritis in general :wink:
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    This kind of thing is soooo frustrating I agree, Toots. It's such a disconnect between something of dire importance to the individual vs. day jobs, 9-5 routine and pushing of paper. Hopefully some caring professional will straighten out the problem soon. Waiting in pain is indeed tough.

    Hang in there!! (((()))),
    Anna
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Thank you Sticky and Anna x

    Rheumy definitely has correct information as this was confirmed with me and doc received the initial correspondence from him in December.

    Anyhow, seems my frustration is not to end quickly. Called rheumy secy back again. She's going to resend - yet again - but understood my frustration and read the letter to me.

    Rheumy has confirmed mild Raynaulds and Hypermobility in certain joints - including my right knee, which is the one that has caused me problems for years and started this particular saga. So that may provide an explanation for the recurring issues with that joint.

    However, he has said in the letter to my GP that the MRI on my feet showed no synovitis or erosion and he has retested for RF which continues to come back negative....

    ..... and clinical evidence suggests there is NO persistent inflammatory arthropathy, but should circumstances change, he would be glad to review this. :shock:

    Now, I know I should be delighted by this news, really. But it's just brought me right back to the start. If not inflammatory arthropathy, what in the name of all that is unholy is wrong with me?! I'm sorry, that was rhetorical, but all the same, I feel like the last 9 months have been a waiting game but kept going through the pain and uncertainty believing that I would be able to get some kind of resolution eventually. I know inflammatory arthritis is not easy to diagnose in the absence of neon-flashing indicators, but what are you supposed to do in the meantime?

    I've made an appointment with the GP, although not the one who referred me to Rheumy, I'd have to wait a month to see him :roll: so locum it is. I'm so disappointed, which seems a ridiculous thing to say when I'm being told I don't have some horrible auto-immune disease, but I'm just so worried this is going to continue for however long with no end in sight.

    Thank you for listening to my rambling. I feel bad that I've just come back to the forum and now I'm sobbing on your collective shoulders. Hugs to you all, thank you for being here x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Gosh Toots, don't worry about coming back sobbing. That's what I thought we were here for. And, we all seem to do the sobbing sometimes. I'm certainly one...

    I do feel for you. I've had the disappointment of receiving no answer which feels more negative than receiving an unpleasant diagnosis at times. It's an awful feeling to be left in limbo without answers, (((()))).

    Well, the confusing state of the non-inflammatory, inflammatory arthritis. Remind me, did you respond to prednisone? Sometimes, if you did, that can be a clue for doctors who are not seeing any other signs inflammatory in bloodwork, joints, etc. Also, the basic pathology of seronegative arthritis is enthesitis, and entheses are not supplied richly with blood supply, leading to neither raised inflammatory markers in blood nor obvious joint inflammation. This does not negate your painful symptoms. From experience, enthesitis is a very, very painful thing, though different from synovitis-type pain. Glad you don't have signs of that or joint erosions at this point, although these things can change over time.

    My best advice is to keep complaining and revisiting your doctor at regular intervals to build up a bigger picture of your symptoms over time, and, keep your symptom's diary, including fatigue levels. They can relate to inflammation too, as well as to pain. This may help them better define an inflammatory picture and better treatment for you. Sorry it's not more straightforward...

    xxAnna
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Toots!

    It's great to hear from you again, though I'm sorry you're having such a tough time. I'm not unfamiliar with the frustrations caused by lax working standards within healthcare. As in all occupations, some workers are great and some are rubbish – and when you're in limbo, rubbish hits pretty hard. Here is a phoenix smile :>)

    Anna's post is excellent. I can't add to it, but I just wanted to say it's all good. Here is a phoenix smile for Anna :>)

    Finally, there's no need to apologise for being away, as others have said. Ill health is hard work! (*steam emerges from ears*) :lol:

    Best wishes,
    Phee
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Thank you Anna and Phoenix both, for your kind words.

    Anna, I've never been prescribed prednisone so that's a non-starter, but I'll add that info to my ever-increasing list of things to remember.

    I just can't understand, when the swelling in my tendons and bursitis at my ankles, together with swelling at the toe joints is clearly visible with the naked eye, why this is essentially being disregarded. I puzzle over what another cause of this would be and of course no alternative theory has so far been offered. My GP was so sure it was a rheumy issue he'd started me on Sulf if you recall, which consultant had me stop in December. Neither the Sulf nor Naproxen seemed to do anything for me.

    I've been 'reasonable' for the last few months but know that I'm about to experience issues with my knee again - it starts with a cold knee, and turns into a cold and sore knee, which is the stage it's at now, together with flu-like ache in the rest of me. I just feel I can't go through another 6 months like I just did with unanswered questions.

    Anyhow, I'll let you know what the doc says tomorrow, although I suspect I'll be fobbed off. :(
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    And I had the opposite; GP didn't see inflammation around tendons but rheum picked it up right away......BTW I get the cold-joint-before-pain thing too.

    Sorry you, hope you have luck with your appointment.
    xxAnna
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi again, Toots,

    You're welcome, as always, for kind words :)

    I do recall that you started on sulf and I'm sorry that neither this treatment nor naproxen worked out for you.

    I hope you get some answers at tomorrow's appointment. I'm sure you'll remember to take a list and/or diary of symptoms, and make sure to emphasise that your problems are causing you distress. I wish I could go with you, but failing that I'll be in your pocket. Please let us know how it goes :>)

    Best wishes,
    Phee
  • barbara12
    barbara12 Member Posts: 21,235
    edited 30. Nov -1, 00:00
    Hi Toots
    So sorry to hear how you are being messed about, I have found recently that the NHS seems to have forgotten how to converse with one another..not a clue what is going on wouldn't you think with the net and faxing ...things would run much smoother..I do hope you get some proper answers very soon, and please update us when you can..xx
  • Fionabee
    Fionabee Member Posts: 146
    edited 30. Nov -1, 00:00
    Have only just seen this, have been away for a bit.
    I can completely relate to this and understand your feelings, my discharge from hospital information went missing. Hospital said it wd be sent electronically, what they actually do is scan and fax, either ways it got mislaid. The copy that my husband handed in in person ended up in a huge pile of stuff awaiting "scanning & attaching to patient records" because he did not tell the receptionist that my meds had been revised (in which case it would have been read by a human being) it was added to a pile that just get filed. I'd have thought most hospital discharge letters have some med changes??? Well we'll know next time.
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Hello again. Any news? I'm thinking of you.
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Thanks everyone.

    Still in limbo as docs appt on Wednesday was a complete waste of my time - the locum doctor was worse than useless, first thing in the morning appointment, already running 40 minutes late, spent the first few minutes talking about the previous patient (!no sensitive information, but I mean, what?!!) explained RA to me in it's different guises (yeah, because I don't already know this), went off on tangents about how things are different in Ireland (she's Irish) and talked over me when I spoke. Didn't listen to a thing I said. Said nothing she could do as they still didn't have a copy of the rheumy letter, and then insisted I could march right back to the rheumy and tell him 'that despite potential liver problems I wanted to be put on methotrexate' quote. Printed off a copy of the original rheumy letter that I'd told her I already had a copy of then told me in no uncertain terms that I was taking it home with me as they 'don't keep paper' at the surgery. The only sensible thing she did after I eventually just stopped talking was suggest I ask the surgery receptionist to contact the rheumy over the missing letter. Then I got out of there as fast as I could. I honestly have the highest regard for all the doctors working at that practice, I've been with them for 30 years, and having been in customer care all my working life, I don't make complaints lightly, but I suspect I'll be sharing my opinion of this doctor with the head man on my next visit. :x

    Receptionist called me back later to say she'd left a message for rheumy secy, but long story short (because you may, like me, be bored with this story by now haha) she found my MRI and the letter from the rheumy on the system. :roll:

    I think she could tell by that point that I was a tad frustrated. I told her I needed an appointment with Dr who referred me (and who's been metaphorically holding my hand throughout this) and that I knew I'd have to wait a month but frankly I didn't care. She conjured an appointment next Wednesday with him for me.

    So, that was the long version of .... back to square one! Thanks for bearing with my folks, I really do appreciate every little comment.

    Anna - I find it interesting that you also start up with a cold joint - I always thought this was a little odd, but now intrigued. Thanks for sharing. x

    I'm feeling a bit knackered today, so please forgive me for not responding around the forum. I'll be back to join in soon x

    Hugs to all x
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Oh Toots, I can feel your frustration and it's no wonder you are frustrated. Please don't apologise for not being around on the forum. Your need is to look after yourself right now (I'm tempted to add 'as no-one else seems to be doing it'). I can only hope that better things come of your next appt with the doc you've seen previously. I have some sympathy for locums as they are chucked in at the deep end. Simple coughs, colds, bugs etc are easily dealt with and even patients with new symptoms but your case is complicated already by mismanagement. Chin up, girl. All the best for Wed.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Toots,

    I'm so sorry you had such a rubbish time with the locum. It seems fiendishly bad luck to go through this sort of thing when you're in limbo already. I'll be keeping my toes crossed tightly for the GP appointment :)

    Best wishes,
    Phee
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    A very sleep deprived & sore skinned me can merely offer these Toots

    ((((((Hugs))))))

    Sorry huni. I hope things go much better with ure usual GP.

    Xxx xxX
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Thank you everyone, as always it lifts the spirits to know you're all there x

    GP has basically said he's stuck. Rheumy has confirmed mild Raynaulds (which comes as no surprise) and Hypermobility in selective joints (again, no surprise there) but because there is no clinical evidence pointing positively at a specific inflammatory arthritis, there is no way of progressing further.

    Essentially, as so many of you have experienced, because they can't say yes it's definitely XYZ, it's none of them.

    MRI showed no inflammation or erosion - which is a good thing I guess. GP had another look at my ankles, which of course are clearly swollen and sore and muttered under his breath a bit. But he's at a dead end - he offered anti-inflammatories, which I've already had and did nothing for me, so I declined. Painkillers, yeah well, I have a stock full of them and won't take them unless I'm crying in pain as they give me a sore stomach and make me loopy.

    GP has said that all he can suggest/recommend at this point is a referral for an exercise program which will concentrate on strengthening my muscles to support and protect my joints as much as possible. It's not a physio referral, but rather a referral to the local council sports centre which apparently won't be free but will be heavily subsidised. He has said to give it 3 months or so with exercise before considering going back to him. Not entirely sure what good it will be going back to him anyhow, since we're at such a full stop. And of course he said I'd be in a vicious circle as exercising with existing swelling and pain plus the hypermobility will probably cause more pain.

    So, effectively in the absence of RF positive, or psoriasis (neither of which I want thank you very much ha!) no diagnosis can be made and so we have to assume for the moment that it's not an inflammatory arthropathy. After spending time on the forum, it really shouldn't come as a shock to me, but I know many of you will appreciate my frustration with the way things stand at this point.

    I guess I'm just going to have to pull on my big girl panties and get on with it, right?

    Hugs to you all, thank you for caring xxx
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Toots,

    Sorry I've only just spotted your post :)

    This is a bit of a flying visit (as usual!), so just one thought for now: maybe it's time for a different GP?

    In the meantime, have a brand new pair of special big pants!

    Hope you've had a reasonable weekend :)

    Best wishes,
    Phee
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Toots;

    I really feel for because I spent some time in that exact circumstance. Limbo, purgatory, there are a few names for it. Depending on the day there may be a four word preface too!

    Take care, xxAnna

    PS, I've never had luck with the big girl panties......
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    I was labelled for years as having an 'inflammatory arthritis' but the change of label meant nothing meds-wise. It was a very frustrating time, I had lost five years of possible treatment thanks to my believing my then GP that my seriously swollen left knee would get better ( ye gods, Daisy, you daft mare! :lol: ) and my first rheumatology appointment being a dead loss ('You don't have arthritis, you're orthopaedics problem.' A year later I was back in rheumatology!)

    YOU know there is something up and I fear it will be down to you to battle on. That consult last Wednesday was far from satisfactory (I was away hence my late response) but I think you would be within your rights to complain and ask for another appointment with someone more competent. Making a fuss is not easy (for many of us it does not come naturally) but on this occasion it's justified. DD
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Boomer13 wrote:
    PS, I've never had luck with the big girl panties......

    I have :lol:

    ;>)

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