Rheumatology appointment ( first referral )

I went to see a Rheumatologist, (he is the head of the department) a couple of days ago.

I am not sure what to think, other than he seemed to have made his mind up about me before even meeting me.

I have suffered from back problems and stomach problems for most of my life, but until an accident nearly 4 years ago, managed to live a normal life, including running my own businesses, and having 3 children, albeit in a degree of pain most of the time, occasionally very bad.

I have Degenerative Disc Disease, Spinal Stenosis, inflamed Facet Joints, torn and bulging discs, and sciatica.

The Gastro intestinalI Specialist I saw believes I have a form of inflammatory bowel disease, although since I have not lost weight, he gave me dietary advice, which has helped enormously, with strict instructions to come back if things deteriorate.

The Doctor I saw this week, asked a couple of questions glanced at my hands, gave me no time to ask questions, and said all my symptoms are to do with my back problems. He prescribed me Celecoxib to be taken for 2 weeks if I have a flare up, and said I probably would not have one anyway.

The reason I saw my GP is because of bilateral pain and swelling in my fingers, shoulders, knees and toes, accompanied by feeling very poorly, that had been going on for a couple of months, I could barely use my hands, and walking was also very painful because of my toes. The Pain was no better at rest.

I have also developed Restless legs syndrome very severely this year, overnight, now controlled to a good degree, with Pramipexole, and also recently very dry eyes, mouth skin and nails, for which I am using eye ointment every day, for the eyes.

I have also severe palpitations with chest pain, and am going to cardiology in January.

Is this what one would usually expect from one of these appointments, he took no history, and I was only there for about 10 mins. When he shook my hand as I left, I winced from the pain, and he just shrugged and turned away.

I really do not know what to think, I was not expecting an instant diagnosis, or cure, but at least some sort of interest in how I am.

I forgot to say my bloods are normal, and he did say that if things got very bad, to go back to my GP, he also said I am one of those people whose body is ultra sensitive and go into spasm easily.

I do not even know if I am on the right site to be writing this, and am still feeling very weak and in pain with my joints, but I do not at present have deformities, which he said I would have if there was a serious problem.

I also have widespread muscle pain and tender points, with dizziness when I turn my head.

I really do not know where to turn next, and feel like just giving up.

Sorry to offload like this, but I so needed to talk about this.

Thanks for listening,

Caz

30 Replies

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  • Hello Cazbaz, How awful for you and very disapointing to come away without a single answer to your problems. But, I have a feeling that you are about to find out that you are not alone in your disappointing experience. I had an experience just like yours with a gastroenterologist a few years ago, he was also verbally abusive even though, thankfully there was a nurse in the room at the time. I did receive an apology after making a complaint.

    In my case, I'd had tummy problems for many years which seemed to coincide with urticaria flare ups and I had previously had two colonoscopies which revealed nothing untoward. With hindsite, I believe that the consultant was having a bad day and I happened to be the one he offloaded on (shouldn't happen though). I might add that since being diagnosed with RA, my urticaria and tummy problems have ceased, perhaps because of the medication I am taking.

    It would seem to me that you need to go back and talk to your GP who will perhaps contact the rheumatology doctor on your behalf, or do some further investigations of his/her own. I wish you well and good luck in getting to the bottom of your problems. Petalnumber2 xx

  • Thank you for replying so promptly, I really had felt hopeless, I do feel better after hearing from you and how wonderful to have your tummy problems disappear! I can barely imagine it!

    I will keep ploughing on, my GP is at least sympathetic, so I have him in my corner hopefully,

    Caz

  • I had pretty much the same kind of appointment a couple of years ago, only I was paying privately to see a rheumatology professor. He definitely took no real interest in me at all, wanted to brush it all off as fibro,and couldn't get me out of the clinic room fast enough, but did suggest to my GP that I got referred to an inflammatory arthritis specialist through our local NHS. In contrast, I found another private specialist who took 1.5 hours in the initial appointment and was incredibly thorough!

    I don't know what the answer is. It just seems that the NHS is great for things where they can do a test or two and make a spot diagnosis (including for some RA where blood tests are positive and people have obvious joint swelling), but when it is something systemic that has been going on for some time, its hopeless. It also seems that in the NHS they are far more likely to dismiss anything that looks degenerative as being just normal age-related, when actually it could well be secondary degeneration from a primary inflammatory condition.

    If your gastroenterologist was good, you could try asking for a follow up with them, and explain about all your joint stuff. They may make a better connection between it and inflammatory arthritis (including spondyloarthritis, and not just RA), and may be able to set things in motion to get you looked at differently. I think if you don't have positive blood tests for RA, then it probably isn't worth seeing an ordinary rheumatologist (even a professor) unless they have a definite interest and specialism in spondyloarthritis or sero-negative arthritis.

    I think you could justify going back to the gastroenterologist by saying that you are "deteriorating" generally - but when you actually get the appointment be clear that a lot of the deterioration is the increasing joint problems that you are sure are related somehow. Ask then if treating the "gut" part is likely to help the joint stuff (which it should do if they use the right meds) and if there is a specific rheumatologist they could recommend who would understand the connection.

    Good luck, and yes, you do have to fight sometimes.

  • Thank you Earthwitch, I had not thought of that, and in fact I am now having to take lansoprazole every day for severe indigestion and heartburn, so it would be a good idea, he was talking about performing more tests if I got worse, and was such a nice man, I think I will do this.

    Thank you again, you have given me some hope, sometimes it is hard to see things clearly!

    Caz

  • have thought of possible gall bladder probs gave me severe heartburn and indigestion might be worh mentioning xxxx

  • I was checked for this with an ultra scan a couple of years ago, with the gastro department, and they said it was all clear, I think I may have to have the upper intestinal track checked which I must say I dread, that is what I was told if things progress.

    Thanks for you reply,

    Caz

  • I can imagine that was hugely frustrating as an appointment! You wait for ages to get one, so more than annoying if it doesn't then help move things forward. I've learnt that doctors don't necessarily "hear" what you're telling them in the way you expect, even when you think you're being clear.

    I'm not saying this to excuse them as there really is no excuse for such bad treatment, but just to share my experience. It's as if they have some sort of filter in their ears that only lets through certain words and ignores everything else. One time I had a horrible appointment and at the end the doc made some comment about things can't be that bad if I was still managing to sleep ok. Since I thought I'd just spent 10 minutes explaining how the pain disturbed my sleep I was appalled! But when I thought more I realised that I'd never said straight out "the pain stops me sleeping", but had talked more about how my partner was going loopy because of me waking him up, which was of course because I was in pain, but I don't think I actually said that specifically. So it is possible that whatever GP said in referring you, and however you explained the problems you're having just didn't register in this rheumy's brain as RA symptoms and he/she was just aware of no obvious blood test results in someone with back problems? Although even so it is outrageous that he could say that having no obvious deformity is significant given that the whole point is to treat you BEFORE it leads to permanent deformity!

    Have you discussed since with your GP? If you have a sympathetic GP they could re-refer you to another rheumy. And in the meantime you could keep a diary of symptoms of pain, swellings and so on in your joints, and take photos on days when it's very obvious so that you have more to show the doc. I'm sero-negative and have a naturally stable ESR (the blood test that highlights inflammation) so it took me 3 goes to get diagnosed as I had no obvious signs in my blood. Good luck, but keep trying! Polly

  • I believe you are correct, and would love to know what my GP wrote in the referral.

    Sleep problems were not even discussed, I usually get between 3 and 5 hours a night. In fact there was no time to discuss any thing, also they asked in the letter for a urine sample, which was only tested when I asked if they still wanted it, I don't believe for one second I had any chance of being taken seriously.

    I will go back to my GP, although I am not sure what can be done next.

    Thanks for your reply, I did think it odd what he said about deformities!

    Cazx

  • Hi - thats awful poor you.

    I know I've been quite lucky to be diagnosed and treated so that I'm in little pain these days and I think Earthwitch is right to say that's my specialists just look to the obvious signs and symptoms to make a diagnosis but I'm still often appalled by people's experiences with doctors on this site and elsewhere. I had an IUD inserted once by a gynaecologist (a man) who was so brutal that I passed out with pain as he left the room. The nurse was shocked and got me water and pain killers and insisted I lie back down - and he came back in and told me to hurry up so he could see his next patient!

    My rheumatologist has been very reasonable and quite kind to me but then my blood results and symptoms matched so I was relatively straightforward second time round. He is always quite brisk though and I've had two lots of 8 month waits to see him since diagnosis do always more to ask than there's time for him to answer.

    From my experiences where I live I've found that, compared to cardiology, dermatology and gynaecology - rheumatology is very beleaguered and I think this echoes a national trend - maybe even an International one. And, having friends with various health problems dotted around the world, I don't think the NHS compares that badly - or only in so far as government policy and funding affects it so the present incumbents have not made things better at all- if anything the opposite is true. Its very variable - but then you can get bad doctors in most countries and I don't think the NHS has a monopoly on them.

    I agree about going back to the gastroenterologist who was so helpful and also to your GP. Sorry you've had such a rough time for so long - what bad luck you've had health wise. You are well overdue some good fortune so lets hope its on its way at last. Tilda

  • Thanks for your reply, I was not sure what one would expect from a first appointment, but this was not it, I would almost have preferred him to have refused to see me, at least I would not have gotten my hopes up.

    I am not blaming the NHS, just feeling fobbed off, and as if I have wasted my time, just to be made to feel that I am making a fuss about nothing, when that could not be further from the case.

    I have seriously thought of finding a private specialist, but apart from the expense there really is no guarantee they would take any more interest.

    As you say it is the luck of the draw, and tough on those people who do not have straight forward symptoms and blood test results, although by the time I had those the flare had all but died down, not sure if that would make a difference.

    I will have to give this some thought, I just wish I had some quality of life, I have so much pain and difficulty walking ect, I don't want to end up with joint deformities too if I can help it.

    Best wishes to you,

    Cazx

  • I write the part about NHS consultants as a response to Earthwitch's reference to rheumy patients being better served in other countries - not because I thought you were criticising the NHS.

    I'm not sure this is correct because I believe rheumatology is a pretty inexact area of medicine where having good intuition and extra compassion are high on the list of requisite skills. But rheumatology is also regarded as a pretty depressing specialism I'm told by doctor friends so it attracts far fewer medical students and that's why I say its beleaguered. That said there are some very good and compassionate rheumy consultants out there but you have just been terribly unlucky. There is nothing worse than being made to feel like a time waster and it is totally unnecessary. If you have been referred by your GP then its obviously going to be for a good reason! Tilda x

  • Thanks Tilda, I have been thinking about this a lot, it must be tough doing that job, as there are so many people in pain, that are not easily helped such as I.

    Having said that, he is head of the departments for several hospitals, so I would have expected a more professional approach.. At least he did say he would see me again if my GP referred me, so that is something.

    I will go to see my GP about the tummy thing, as one thing he did say was that it is all probably connected, I was waiting for him to ask if I was depressed, at least he did not do that!

    Best wishes, and I hope my reply did not upset you, I would never intentionally do such a thing,

    Caz

  • Heck no I'm not in the least upset - I was wondering same of you reverse actually?! I know you say that he's head rheumy but I think I would ask to be referred to someone else next time as showing that degree of poor listening skills might not improve on a second meeting -even if he was having a bad day.

    You need someone with extra antennae when the bloods and joints don't represent how you are feeling - not someone who just requires joints to be grotesquely swollen,hot and red and blood markers to be shouting "this is RA!" from the roof tops! Not many on here have all the classic characterises of RA actually.

    Incidentally I came away from my first rheumatology appointment with "inconclusive" ringing in my ears, although he did say that from my blood and symptoms something was going on. Although not as dismissive as yours he was distinctly brisk with me after questions and a thorough examination. He is also head of rheumatology in Grampian I believe. Second time, four months later,I went armed with photos of swollen joints - knowing that my GP was really pushing for a diagnosis and treatment for me this time and had pestered him too - I felt he was far more sympathetic the second time and diagnosed me then and there. Good luck to you and keep us posted. Tilda x

  • No, not upset at all, I am just so grateful to have your support! I don't always get things quite right when I write them down, lol!

    I will do as you say about the photos, I am not going back to him if I can help it. The more I think about it, the more I believe I may just as well not been there!

    Never mind, I shall keep trying, thanks again,

    Cazx

  • Yes hang in there and keep trying - good to do your research re RA and all the different types of arthritis too if you can face it. I know its horrible when you don't know what's wrong and can't explain it easily to family and friends but you are certainly not alone.

    And the thing is that even with a diagnosis so few people from the general population know what RA is or involves. Even if I tell people that I can't drink because I'm taking a chemo drug which I inject into my belly and have monthly blood tests to monitor - plus an anti-malarial tablet daily (and many here are on much higher doses and more medication than me) people are baffled so I've given up mentioning it now - few friends really get it and family are too squeamish to want to think about it much at all! Tilda x

  • I just don't get why rheumatology isn't more popular with young doctors these days. I can understand maybe ten years ago why, but there is so much going on now with genetic reasearch, understanding of inflammatory processes, new drugs, etd, that I would have thought it would be a very exciting area to work in. Maybe the NHS should do some good advertisiing to make it a bit more trendy to be a rheumatologist?

  • No I can't see it either - but I don't think it's just an NHS problem Earthwitch. I read something about the same problems on RAWarrior a while ago. And people keep telling me that it's because rheumatology isn't perceived as sexy in the way that cancer and other specialisms are but how exactly is oncology or neurology sexy?!

    The person who told me this is our boss for the new commission and she was complaining that rheumatology dept never gets any funding or support for art projects - unlike other areas of the big hospital - because along with geriatrics it's seen as the last bastion and is so "unsexy". I found this really troubling and I think it has a lot to do with the ageist misconceptions over arthritis being mainly an old person's disease. But then if I were a doctor looking to specialise I'd find Alstheimers very interesting too so maybe I'm just a contrary odd ball?

    On one hand I want to change the misconception that inflammatory arthritis is linked with older people but on the other hand I don't want to end up pandering to ignorant people's ageist prejudices either! I just think the arthritis charities have to do an awful lot more to promote information and interest in inflammatory arthritis - especially up here where we live. I hear so much on our local radio station about cancer and diabetes and heart disease, falls etc - even Crohns - but never is arthritis mentioned apart from in connection with monthly meetings with bingo and strathspey and reel society gatherings. Oh pppllllease! Tilda x

  • Hi Caz I am sorry to hear that you had a bad experience unfortunately many seem to have the same on this site. Earthwitch has given you some good advice and it would be worth talking to your gastroenterologist.

    I hope you get some answers soon unfortunately yours is a common experience and you will find good support on this site

    take care and hope 2013 is better for you.

    crisxx

  • Thank you Chris, it is good of every one to try to help especially as I do not know what is wrong,

    I think it is hard to not have a diagnosis, when people ask what is wrong, I never know really what to say, and I always try to put on a happy face, so even most of my friends and family do not understand.

    I know I should not, but old habits die hard, and my working life was always in the public eye, and the show must go on was the way we had to work!

    Unfortunately I probably come over this way with Doctors too, I had a breakdown many years ago, due to extreme stress and postnatal depression, and one Doctor who had known me for years, said at least now I know you are human, we all thought you were superwoman with all you coped with!

    Best wishes Cazx

  • I can understand exactly how you feel, I have not got a definitive diagnosis yet, thought I might when I went to see rheumy on 12th Dec but was diagnosed as having undifferentiated inflammatory arthritis as I did not have raised inflammatory markers ( CRP and ESR) and my anti CCP was negative despite having a raised Rheumatoid factor and clinical signs of RA. I am going again on 12th Jan and hoping for something definate but not holding my breath. I think the inconsistencies in signs and symptoms with auto immune diseases make this more difficult but I suppose being told not sure is better than being told one thing and then another.

    I recently retired (March) from a very busy working environment and do not regret it as I had 12 months of hell and was on the verge of a breakdown myself which resulted in me being sick for 6 months last year. I was also seen as superwoman and my staff were really surprised at me being ill as I was never off sick.

    take care crisxx

  • It sounds as if you have done the right thing in retiring, I also was in the same sort of position running a very large and busy health shop of all things!

    I also worked through illness, and I eventually had an accident at work, a very bad fall where I thought I had broken my back, their fault, I had reported the area I fell as unsafe, and the company told me not to make a fuss, I wish now I had made more!

    This resulted in my becoming disabled, and also having PTSD, which I had to have treatment for. All this is nearly 4 years ago now, I still have nightmares but the flashbacks have stopped now thank goodness!

    I suppose I feel as If I have so many problems already that I just do not want to deteriorate because of lack of treatment, but it is hard to know which way to turn!

    I will be making an appointment with my GP as soon as possible to discuss the appointment with him, also to discuss my latest folic acid blood test, as he told me it was fine, (after being rock bottom 5 months ago and taking prescribed for 4 months) when in actual fact, it was not even performed! They did a thyroid test instead. I had to arrange the test myself through the nurse!

    good luck with your appointment, I do know how you feel I think, with systemic problems it is a puzzle to find the correct diagnoses, but still important!

    Cazx

  • Hi, have you read the NICE booklet 'rheumatoid arthritis care pathway' by any chance. My GP printed this off for me so I was well armed when seeing the Consultant!!!

    Go to nice.org.uk where you will see the whole thing. Good luck, j

  • I had read this which was why I was upset about the way I was treated, I truly feel it was a waste of time my seeing this Doctor.

    I will do the same as you I think and take a copy with me if I go again, thanks for the tip!

    Cazx

  • Hi,

    I am so.......sorry that you are not getting the help you need. Sometimes it just takes what we lack when we hurt, and that it to just keep hunting until we find a doctor who really understands. Good luck and keep trying.

  • Thanks Tricia, you are right, I must just keep ploughing away until I get the help I need!

    Cazx

  • welcome to the site x

  • Thank you Summer, I feel so much better now I know that I can come on here, and talk to others in similar positions!

    Cazx

  • Hi and sorry to catch up with you so late. You must feel very let down and fed up with things as they stand. I got diagnosed very quickly by a great Rheumy but have just moved to another hospital where they just don't seem to take me seriously at all, including the immortal line in my letter "this very anxious lady". Lol course I was anxious I was seeing a full new department of people and terrified they would not have read my notes, or take my drugs from me , so yep I was anxious, forgive me mr doc!!!!! So it can be hard but keep,plugging away at the GP and bowel doc till you get answers. Love Axx

  • Thank you Allanah,

    I appreciate your comments, I just wish I could have seen him this week, as I seem to be starting a major flare, getting worse daily, I am finding it very hard to type as my fingers and knuckles are so stiff and sore, also all the rest of the usual joints are complaining too!

    I am wondering if the stress of the visit has triggered this flare, although I did feel it was starting when I saw him.

    I shall start celecoxib tomorrow for 2 weeks as he suggested and we shall see how it goes.

    I feel for you as I also get anxious with new Doctors, and they really should recognise this fact because surely it is not uncommon!

    I must stop now, too sore to continue, take care, and good luck,

    Cazx

  • Hugs and hope the meds kick in very soon xx

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