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diagnosis frustration

jdmjdm Posts: 17
edited 30. Apr 2014, 07:10 in Living with Arthritis archive
Hello

I have been living with a seronegative arthritis for 19 years, which has been pretty quiet the last few years. 3 months ago I developed new symptoms and are having a major flare up but as per usual my blood tests are negative and my GP is reluctant to send me to a rheumatologist. Im really frustrated as I know that something is not right but don't think I am being treated seriously because of my results. Has anyone else found this?

Comments

  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Hello jdm and welcome to the forum.

    There are many types of arthritis – over 200 in fact – and not all are sero-positive. Have you ever seen a rheumatologist? I'm wondering simpy because you use the term sero-neg whereas most people who have a negative blood test assume their arthritis must be osteo. What medication have you had?

    It's true that many GPs don't know much about auto-immune forms of arthritis and can sometimes be fooled by negative blood tests. However, if you've had yours for 19 years, with no DMARDS or anti-tnfs, I'd have thought you'd have quite a lot of deformity by now. Where is your pain? What are your symptoms? Can you give us a bit more info please?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • ichabod6ichabod6 Posts: 963
    edited 30. Nov -1, 00:00
    Hello sw,

    What is your authority or reference for saying not many gps know a
    lot about sero negative?
  • jdmjdm Posts: 17
    edited 30. Nov -1, 00:00
    Hello

    I saw many GPs and rheumatologists 19 years ago and eventually after 5 years was put on sulfasalazine which worked and after a few years I stopped taking it and have had only minor pain and flare ups since. They original ly though I had reactive arthritis or possibly seroneg RA but I had no morning stiffness. I now have pain and stiffness in my spine at night and in the morning so am thinking poss RA or ankylosing spondylitis? I have no visible joint damage hut have had no x rays for 14 years! I have had it since I was 19
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    I'm going by what I keep reading on here, ichabod. So many people tell us their blood tests are negative so their GPs think that's that. Personally I had no problems with diagnosis but mine is a sero-positive version. Actually, I don't think GPs know much about any auto-immune types of arthritis and I don't expect mine to. That's what the specialists are for.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • BoveyBovey Posts: 25
    edited 30. Nov -1, 00:00
    I have had ankylosing spondylitis since a teenager. I am now nearly 60. I was only diagnosed in 2011 after I insisted on a referral to a rheumatologist. My GP was adamant I did not need the referral so I paid to go private. My bloods done in the surgery did not show any reason for my pain except a high ANA which was dismissed. I was HLA B27 neg. I had severe thoracic pain which was diagnosed as neuropathic ?cause. I was prescribed morphine then fentanyl. No MRI scan was done and X-Ray of the area was negative. That was 20years ago. The private rheumatologist provisionally diagnosed AS and got the necessary diagnostic tests done thankfully on the NHS. She was appalled that it had taken so long to diagnose me. The delay has left me severely disabled as the disease was left untreated for so long. I cannot change GP as there is only one surgery in the village and all the GP's got fed up with me. I complained about my treatment ( more happened than I can put here, like being diagnosed incorrectly with chronic fatigue whilst being heavily sedated on large doses of fentanyl and oral morphine due to hyperalgesia) but after a phone call from the senior GP I realised it was in my interest to withdraw the complaint. I must add there that the GP did not say anything improper but I felt intimidated all the same. I now see locums or no one. Hopefully my case is an isolated one, but as a consequence I personally have little faith in GP's knowledge of muscular/skeletal diseases.
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    jdm wrote:
    Hello

    I saw many GPs and rheumatologists 19 years ago and eventually after 5 years was put on sulfasalazine which worked and after a few years I stopped taking it and have had only minor pain and flare ups since. They original ly though I had reactive arthritis or possibly seroneg RA but I had no morning stiffness. I now have pain and stiffness in my spine at night and in the morning so am thinking poss RA or ankylosing spondylitis? I have no visible joint damage hut have had no x rays for 14 years! I have had it since I was 19

    Right. So the rheumatologists did think you had something going on as they don't prescribe DMARDS such as sulphasalazine for nothing. Reactive arthritis, as I'm sure you know, comes as a result of infection and, if you're lucky, can go away again but doesn't always. And it can return. And it can develop into another form of arthritis (http://www.nhs.uk/Conditions/Reactive-arthritis/Pages/Treatment.aspx) so I, too, would be concerned I your situation.

    I've had RA for over 50 years and my spine is my best bit. I think it's unusual for it to be affected by RA . Ankylosing Spondylitis is another matter. I've no experience of that but the spine can also be affected by OA.

    I think you're right to be concerned. Can you see a different GP to ask for a referral? Or at least an x-ray of the spine?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Bovey wrote:
    I have had ankylosing spondylitis since a teenager. I am now nearly 60. I was only diagnosed in 2011 after I insisted on a referral to a rheumatologist. My GP was adamant I did not need the referral so I paid to go private. My bloods done in the surgery did not show any reason for my pain except a high ANA which was dismissed. I was HLA B27 neg. I had severe thoracic pain which was diagnosed as neuropathic ?cause. I was prescribed morphine then fentanyl. No MRI scan was done and X-Ray of the area was negative. That was 20years ago. The private rheumatologist provisionally diagnosed AS and got the necessary diagnostic tests done thankfully on the NHS. She was appalled that it had taken so long to diagnose me. The delay has left me severely disabled as the disease was left untreated for so long. I cannot change GP as there is only one surgery in the village and all the GP's got fed up with me. I complained about my treatment ( more happened than I can put here, like being diagnosed incorrectly with chronic fatigue whilst being heavily sedated on large doses of fentanyl and oral morphine due to hyperalgesia) but after a phone call from the senior GP I realised it was in my interest to withdraw the complaint. I must add there that the GP did not say anything improper but I felt intimidated all the same. I now see locums or no one. Hopefully my case is an isolated one, but as a consequence I personally have little faith in GP's knowledge of muscular/skeletal diseases.

    Bovey, I think you've had a particularly difficult time of it and I hope things are better for you now. Whether they are or not I am confident you'll find plenty of sympathetic ears on here. We haven't all experienced your problems in getting a diagnosis but we do understand pain and disability.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    GPs know a little about a lot whereas rheumatologists know a lot about a little. I too have a sero-negative auto-immune arthritis which went undiagnosed and ergo untreated for far too many years because my then GP kept telling me my fat left knee would sort itself out (and I, stupidly, believed the silly bat). It was a physio at my local footy team who referred me to rheumatology :lol: but even then I wasn't given a firm diagnosis, just the vague umbrella title of 'inflammatory arthritis'.

    You feel / know that there is something up so challenge your GP because you are within your patient's rights to be referred to rheumatology. It may not yield immediate answers but it should be done. Please contact AC about their publications (maybe they can be downloaded too, I don't know :oops: ) so that you can load yourself with facts about the complexities of auto-immune arthritis. GPs should be more willing to refer patients to those who know more about a particular health problem.

    I remember my consultant telling me some time ago that rheumatology was one of the fastest-growing areas of the NHS which, to me, means that more GPs are becoming more aware of this minefield. Good and about time, says I. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12barbara12 Posts: 20,777
    edited 30. Nov -1, 00:00
    Hello jdm
    I do feel for you,and like the others have said there are so many forms of arthritis that GPs aren't up to scratch ..but I do think that scans and xrays should always be done to make sure there is no joint damage..I am due to see a rheumy in May after 4 years of OA ..because of new symptoms but also because of joint pain I had in my teens..I have learned one thing from this forum you have to ask for things ...I do hope you get some proper help very soon.
    Love
    Barbara
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi jdm;

    I have a long history of lack of referral based on seronegative bloods. It seems to depend on the GP you see. Mine adamantly refused for years and I went along because I trusted his judgement. When he became ill and I saw his locum, she referred my instantly, and correctly I found out :o The rheumatologist didn't hesitate in diagnosing me with inflammatory arthritis, even though he didn't know exactly which type. I have PsA (but didn't have psoriasis at that time) and spondylitis.

    You, who have already been diagnosed by a rheumatologist, should receive a referral without question.

    Best wishes, Anna
  • jdmjdm Posts: 17
    edited 30. Nov -1, 00:00
    Thank you for all your replies. I will be going back to my GP next week and reiterate again that I need to be referred. Its just so frustrating to have to go through this all again. Unfortunatly the excellent rheumatologist who prescribed sulfasalazine was one I saw whilst at university after giving up on my local hospital, I am not too keen on returning there but must as I am very concerned about not being on meds and my joints being damaged
  • PippaPippa Posts: 23
    edited 30. Nov -1, 00:00
    I too think that GPs aren't very clued up, about anything really! They are good for antibiotic prescriptions though. . . And for referring you to hospital!
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Jdm, with luck the personnel at the hospital will by now have changed. In any case, one would hope they can't ignore the fact of your previous diagnosis. Please let us know how you get on.

    Pippa, GPs are generalists. No-one can be an expert in all illnesses and diseases. They deal with the minor stuff and refer us for the specialised areas. How else could it be?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • LubsLubs Posts: 155
    edited 30. Nov -1, 00:00
    Hi,

    I agree GPs are generalists in their knowledge. However, mine miss-diagnosed meningitis, instead the on-call Dr had to send me to A&E where I was admitted. My mother complained, as we've been with the same practice for 37years.

    My husband laughs when we go to see the Dr, he just sits there and says ' tell me what you think'. So you tell him what you think it is, all he does now is agrees with you and prescribes the necessary drugs! :P

    I've also just handed in a form for him to fill in. Before handing them in he requested that I also give him some notes with it so it's easier for him to complete, he's the one who has my medical file!
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    Yes, GP's are generalists and not required to have specific knowledge about many bodily systems and diseases. As they serve as gatekeepers to the specialists we need to see for proper diagnosis and treatment, they should at least know when to refer to specialists. Some refer for everything, others will only refer for very serious conditions. I'll stick with my GP that refers to specialists for everything, that way I have less chance of having something missed. I think that's why she has a huge number of patients waiting to see her. Nobody wants to fall through cracks in the system and not be treated for illness you have, even if it's 'just' a chronic, painful thing like seronegative arthritis.

    The problem is not strictly with GP's as you may see a rheumatologist that does not consider you have an inflammatory illness (or whatever specialist it is) unless you have elevated blood markers and obvious joint swelling. By that logic, I still would not have received diagnosis or treatment :shock:

    It shouldn't be this way but it is.
  • DakkyDakky Posts: 53
    edited 30. Nov -1, 00:00
    Hi jdm,

    Sorry to hear you may be flaring up again. With you having previous treatment for SA, if I were you I'd push my GP as quick as possible for referral.

    Quicker you can get referral (and it does take a while for an appointment) the quicker you can get diagnosed and on appropriate medication.

    All the best.
  • jdmjdm Posts: 17
    edited 30. Nov -1, 00:00
    Just to update, my GP has referred me to rheumatology so hopefully I am now on the road to some decent tests and medication
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Good :D I do hope so.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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