Dont know whats going on

bailey27
bailey27 Member Posts: 689
edited 18. Jun 2010, 11:56 in Living with Arthritis archive
Hi
Please could someone advise me please as I am at my wits-end.
I have been under the care of rheumtology for about a year. I have been on Sulphasalazine since October last year and also been on Prednisalone for about year varying up to 25mg (currently on 6mg). I had my rheumatology appointment last week and he now tells me he doesnt know whats wrong with me and cannot explain the pain i get as my MRI showed normal, which is fantastic news but I am now unclear about what is going on. The first MRI showed bone spurs and inflammation in the SI joint- which is why i was referred to rehumatology in the first place. He diagnosed me with spondyloarthropathy and started me on sulphasalazine. Now he has done a complete U turn and says he deosnt believe there is anything inflammatory going on and so wants me to come of the pred completely. Even if i cut back 1mg a day i am in agony and cannot move the next morning for several hours. He said to continue witht he sulphasalazine, I questioned him why if he didnt think anything was clear that i should keep taking them and he said that I a showing symptoms of inflammation even though i do not have any inflammation. This is really stressing me out as before, at least i knew what i was up against, now i am back to very square one and dont know what on earth is going on. One minute i am being treated for AS the next I dont have anythinng and they cant explain.

Can anyone please help, I went to my very unhelpful GP this morning and all he could say was that 'they dont know what is causing my back pain'. He didnt give me any advice at all and so dont know where to turn next.
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Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Bailey
    So sorry you are feeling so desperate at the moment. It’s horrible isn’t it when you don’t know where to turn for help when you are in so much pain.
    Trying to put my “practical” head on for a minute and making it up as I go along so please bear with me if I start to ramble...
    Given that you are getting no help from your GP, is there a rheumatology nurse at the clinic who you could speak to for advice? At least you could then explain that you don’t understand what you have been told and can hopefully get some further information from someone who has access to all your records and can tell you what is going on. In my experience the rheumatology nurses are normally more accessible than the consultants so it might be worth a try. Also, if the GP has received a letter from the rheumatologist following your appointment last week, you could ask for a copy so that you can see what has actually been said.
    It seems very odd that one minute you have a diagnosis and a treatment regime – and the next they say there is nothing obviously wrong and want you to cut back your meds with no real explanation. I don’t know anything about spondyloarthropathy but can bone spurs just “disappear”? If not I might be suspicious that they were not even looking at the right scan results. I know that sounds unlikely/frightening but it does make me wonder.
    I hope that you can get to the bottom of this Bailey. I know from my own experience that it can feel like an uphill battle with the medics – specially when you are getting no support from your GP.
    Not sure if any of this helps – but I know there will be others along with good advice before long. Please do keep posting though – either with updates or just to share if it helps.
    Thinking of you.
    Love Tilly xx
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Hi Bailey

    I wish I could help, but I dont understand either. Where have the spurs gone?

    One MRI said one thing - the next something ELSE??? this is so very odd.

    Bloods I take it are inconclusive? Isnt there a blood test for AS? Rings a bell there is....

    Surely somebody has some idea what to do? Maybe they are thinking that if they wait 'something' will happen to make the cause of your pain more clear?

    I am sorry Bailey and wish I could help.

    If I were you I would take someone with me for my next apt and get them to help me be firm with them. Until they suggest something to aid diagnosis.

    Love and hugs

    Toni xx
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi both,

    I am completely baffled by it all. I took my partner with me and we both came out very confused.
    It may sound odd, but when i turn the bottom of my back ever so slightly it crunches and bmakes all sorts of noises and is very stiff. I just put this down to the 'spondyloarthropathy / AS' / bone spurs.
    now i havent a clue what on earth is going on.
    My first scan showed 'osteophytes' i am guessing these are bone spurs. It also showd ' inflammatory changes'. So where have these changes gone?? Do you think they may be mixed up??
    I am so down at the moment and dont know what to do.
    xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Take some time out and re-group. These conditions are so difficult: it does seem odd that one set of results showed one thing, the next nothing. I would query whether both sets belonged to you and if not, which one did.

    Write a detailed letter to the rheumatologist listing all your queries and detailing your confusion. Conversations never go the way you want in these situations and things get forgotten. Keep a copy of the letter, perhaps send a copy to your GP too, so everyone is in the loop. I spent years swinging from one diagnosis to the next, I know how frustrating it can be.

    The most important thing is this: you know there is something wrong. Time out now, re-group, then fight on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Brilliant response there from Dd, Bailey.

    I totally agree - first about teh thinking it through after you have recovered from the shock and the idea of putting your thoughts in writing.

    Love Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Just re-read your post bailey and yes, you can have pain without inflammation. That's what I have now, inflammatory markers are in single figures, thanks to the humira (and I suppose the meth, the sulph and the naproxen) but the pain is intense. It is for this reason that my consultant want me to be Hattie Jacques, by putting me back on large doses of daily steroids. Feeling much brighter, more able to cope, but I still hurt.

    I don't understand why the bone spurs have gone. Can they spontaneously disappear? Bone grows, we renew our skeletons every seven years or something, I think, but I always thought that spurs had to be removed, it's growth where it isn't needed. I would query if the results that showed them were yours. Errors do happen. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hi Bailey - how frustrating!

    I'm sure we all have the odd wish that this is all a dream and when we wake up, we'll be pain-free! But you're obviously still in a great deal of pain, and being told that you're being treated for the wrong this is very unhelpful.

    If I were you, I'd insist on some blood tests. The pain is obviously caused by something and it's up to those qualified, to find out what....pronto!

    May be worth getting a 2nd opinion from another GP.

    Good luck,

    Lois x
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi Bailey

    Sorry that you have had 2 very unsatisfactory medical appointments ... I can't make out what is going with you either! I didn't think 'bone spurs' could disappear..

    I would definitely ask for copies of the letters from the hospital and also the MRI scan report(s) - you can then 'digest' them in your own time .. (my hospital sends me copies of everything it sends to my GP)...

    I think the idea of contacting the Rheumatology Nurse is good - If that's possible for you...

    Do let us know how you get on..

    Best wishes

    Marion
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi thanks all for your responses. I am at my wits end with this.
    I have phoned the hospital and asked them to send me a DVD of the MRI scans. I need to sign a consent form for data protectiona nd then can order it so i will have my own copy of the scans - lets see if they have them . get mixed up!? Not sure what i will do with them when i get them but at elast it might make them sit up and think. not sure though.
    My GP surgery is horrible. There are a couple of doctors who are very nice but the others constantly look at their watch while i am in there or tell me '' dont worry if you saw something in a field it is likely to be horse and not a giraffe'' the same gp has said this to me several times. so irritating!!!! To get to see the 'nice' gp's then appointments are only taken at 11am on a thursday, byt he afternoon they are all gone. To see a GP I then have to phone at 8.30 am and get an emergency appointment but then dont get a choice in who i see.
    I always thought that bone spurs were there unless removed so dont know why he said the scan was fine. Does that mean that there are no changes or that they are fine?? He just said that i need to come off the pred asap and as it wasnt good for me. Well, surprse surprise... HHEEELLOO I have been trying to come off them for months and months. I dropped them too suddenyl a few weeks back and ended up in hospital with stomach cramps. If it were this easy to come off them then we would all be off them. I dont intend on coming off them any sooner than i feel is possible It is the only thing at the moment that keeps every thing under control.
    xxx wish i had the answers. gggrrr xx
  • lavenderlady
    lavenderlady Member Posts: 409
    edited 30. Nov -1, 00:00
    I've had growth spurs on most of my affected joints mainly fingers and toes but also my back I suffer with spondelothesis in my back and I get the creeking in my back I've also had many Mris because at first they thought I also had MS but diagnoised SMA no not baby milk, :roll: spinal muscular atrophy adult type but after seeing a dr today to do my wrist tests with dyes and scans etc she also thought like me i have a lot of problems which could all point to one main diagnosis of a type of arthritis, of course the spondelothesis (when a vertabrae slips out and the one above and below close in leaving it trapped,) leaving my right arm and back all numb and I often think practically most of my symptoms will lead one day to a a different conclusion, what I'm trying to say is not only occasionally do the "experts " get it wrong but we know our own body and we are the ones who live with the pain and discomfort every day so keep on and on to get results on your problems its your health and you know better good luck
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi Bailey, Sounds a confusing situation to be in and you must be very angry if you have been on lots of meds and they aren't the right ones for you, never mind lack of a proper diagnosis. Re: the pred, I have the same problem as you. As I remember it, it takes over from the production of natural corticosteroids which is why your joints seize up when you stop. If you withdraw very slowly it should minimize it. I'm not sure if that means that the same thing would happen if you didn't have an inflammatory arthritis - i.e. with the joints seizing up is due to withdrawal or inflammatory process. I know that whilst I am on pred my inflammatory markers are absent. I asked my consultant why they were low when I was in pain and had obviously swollen joints and that was his answer. Perhaps you could get blood tests now and then when you finally come off the steroids and see what is going on.
    Hope you get some answers soon.
    tc
    Sally
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Bailey - how unsatisfactory ... to think you knew what you were up against and for it all change.

    You have some very clear and pertinent questions to ask - I agree with DD put them all in a letter to the consultant - as bullet points .... you need answers.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi i know how you feel we all want a name to put to it as it much easyer to say to people i have ******* but it is only a name at the end of the day. the bone spurs are prob still there but on there own show different artheritis oa usually if i remember right. i have oa and have had inflimation every time i go back to rhummy he says any swelling to see, i go no ,so it come back in *months lol .still on meds keep doing bloods but do not know what it is was scared they would take me off meds, as so bad when not on them can not move if forget to take them soon know about it as start to stiffen and pain gets worse. so do understand how you are feeling you can always get second opinion if the worse come to the worse. do not like the way your gp does there appointments can you speek to them on phone we can and sometimes it all you need some one to explain good luck val
    val
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello,
    I'm so sorry that you'r going through all this. I don't know what to suggest, the rheummy may suggest a doc from another speciacality, who may be more helpful. I have been in a simililar position and I've seen docs in most of the hospital departments!

    I just hope that they get to the bottom of this for you, without taking too long.
    Love Sue
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi thanks again for your replies.
    I am just feeling in the bottom of deep pit and cant quite scream loud enough for people to here me. - if that makes sense.
    I am so down at the moment i am finding it hard to even focus on anything.
    I just think I am goig to be stuck like this for ever. May sound a bit extreme but that is how i feel.
    I have had this going on long enough already and can't see an end to it all.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hang on in there, bailey. It is tough, it will take time, come and moan to us, we're here for you. We've all been in that darkness. I'm not a great one for hugging, but I can manage this. () DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Aw,I love giving away hugs, better for real, but cyber will have to do in this instance. :)

    You have been suffering far too much, for far too long, you have been pushed from pillar to post, messed around big time, in absolutely every way imagineable. Some of us have practically begged you to fight back but I think you are not of that nature from what you have said in the past. If you cannot do it, have you anyone that can, on your behalf, because, dear Bailey, you really do need to make one humungus big fuss and be shooting a letter off with copies to all concerned. This has been suggested to you before weeks ago.

    I am so sorry that it has come a full circle with nothing much learnt except more pain, anguish and frustration and upset.

    I wish I was able to write that letter for you because I most definitely would give it my best. I am so angry because of what you have had to endure from one and all, even your friends. I wish I could pack up some of my energy and send it over to you.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Bailey, I'm sorry you are still feeling so poorly and so miserable. Take care, be kind to yourself, keep reading and posting and although it feels impossible at the moment - life will improve - honest!


    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi
    Thanks but it is hard to see light at end of tunnel especially as i thought things were moving along, although slower than i wished i feel i have taken ten huge steps back and am no closer to where is was at a few years ago.
    Feel a fraud and doesnt even seem right posting on here as i dont even have a diagnosis now.
    thanks again.
    xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are not a fraud. Finding the right diagnosis takes time, it took me nine years, tho admittedly I wasted the first three believing what stupid doctors were telling me, then lost another one as orthopaedics and rheumatology argued whose pigeon I was. Your symptoms are like ours - perhaps that blasted Lymes Disease woman will pipe up again - on the other hand, that may be worth considering. I don't know if her posts are still extant, but she thought she had some form of arthritis, discovered it was Lymes and was 'cured' with antibiotics. Lucky her.

    Take time out. Stop fighting it. Have a good old weep and wail and sulk and grizzle. It is confusing, it is distressing, it is frustrating, it is demoralising, it is depressing. Only you can decide how you want to tackle it and when. We can't do it for you (unfortunately too busy fighting our battles!) but we can help and advise, and we will.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hi Bailey

    So sorry to hear about your situation.

    Could you change GP? Or GP medical centre altogether? Also change Rheumy?

    I would definately write to both detailing your unsatisfaction and questions as they tend to act upon things in a letter as there is a record.

    Don't give up and sending you lots of encouragement.

    Carol x
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Just googled your illness a wee bit and found an informative site for the Spondylitis Association of America.
    It looks quite good as it talks about associated illnesses also.

    Thinking of you.
    Carol
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Thank you so much It gets very frsutrating doesn't it. I went to my GP and queried what was going and told of the latest shoulder crunching and pain i am getting in there and he said well we dont know whats going on at the moment. He then said he would send me for an ultrasound on the shoulder and it it shows up inflammation he will give it a steroid jab. i thought great, thats something, bu then the ultrasoundit not for 4-6 weeks. Not being funny but it will be gone soon and i wont need it. my flares last for about a week or two and then fizzle off.
    i find myself getting angry as well as frustrated.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    If there is something there it will show. Your flare might die down but that doesn't mean that everything else dies down with it. If you want a quicker ultrasound how about going private? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    You are not a fraud. Finding the right diagnosis takes time, it took me nine years, tho admittedly I wasted the first three believing what stupid doctors were telling me, then lost another one as orthopaedics and rheumatology argued whose pigeon I was. Your symptoms are like ours - perhaps that blasted Lymes Disease woman will pipe up again - on the other hand, that may be worth considering. I don't know if her posts are still extant, but she thought she had some form of arthritis, discovered it was Lymes and was 'cured' with antibiotics. Lucky her.

    Take time out. Stop fighting it. Have a good old weep and wail and sulk and grizzle. It is confusing, it is distressing, it is frustrating, it is demoralising, it is depressing. Only you can decide how you want to tackle it and when. We can't do it for you (unfortunately too busy fighting our battles!) but we can help and advise, and we will.



    Lymes is a form of arthritis and antibiotics can cure it. She may not be suffering with a long term arthritis like most of us but she still has a right to post and not be called 'that blasted Lymes Disease Woman'.