Two consultants, two different opinions

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VictoriaLouisa
VictoriaLouisa Non-active member Posts: 15
edited 4. Mar 2013, 09:08 in Living with Arthritis archive
Hi there, I am having a bit of trouble at the hospital. 20 yrs ago I was diagnosed with Raynauds, and Antiphosolipid, malar rash, discoid lupus and photosensetive rash and I often have positive ANA tests. Over 10 yrs ago I was diagnosed with Psoriatic arthritis, and OA by a female Rheumatologist. I took disease modifying drugs for years. A couple of years ago I saw another Rheume in the same hospital (they now share a clinic) and he was very dismissive from the start. Last year ortheopeadic said I needed two new knees but due to only being 39 they didn't want to do them so soon, so said it was up to Rheumatologists to keep the underlying disease in check. I went to see the "new" rheumatologist last week and he said that the first Rheumy was incorrect in her diagnosis, I don't have Psoriatic arthritis, only OA and that I should never have taken Methotrexate etc (there was some liver damage whilst taking it) and he said he was dismissing me from Rheumatology clinic as he couldn't help me. MY GP was really shocked, I've no meds from the hospital but the GP has given me steriods to cope during a flare. Do you think I should write to the hospital and ask for them to arrange another opinion, as it seems mad that two Rheumatologists in the same dept can disagree with each other and I end up in the middle, and how do I know who is right?. Any thoughts would be appreciated. Many thanks.

Comments

  • suzygirl
    suzygirl Non-active member Posts: 2,005
    edited 30. Nov -0001, 00:00
    I would defintely seek a second opinion. Ask LUPUS UK to recommend a lupus specialist to see, some types of lupus rashes can resemble psoriasis and lupus is the great mimicker.

    If the ortho said the underlying disease needs to be kept in check it would imply that your joint damage is caused by arthritis other than OA. This would strengthen your case for a second opinion.

    You have been let down badly and it seems your gp is on your side. You need to be on meds, are you on Plaquenil?
  • VictoriaLouisa
    VictoriaLouisa Non-active member Posts: 15
    edited 30. Nov -0001, 00:00
    Many thanks, I will def contact Lupus UK.

    When I went to see the Rhuem my face was a mess with malar rash and he said it was def NOT lupus rash and was so confident it was not he asked me to see a dermatologist in the clinic next door on that day.
    I walked in and the Dermatologist said straight away "well it's definitely lupus, whether it is discoid or systemic is something we will have to argue out with Dr B......" I'm due back to dermatology in a few weeks, but Dr ......... has still discharged me from Rheumatology.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -0001, 00:00
    hello Victoria
    I would ring the hospital, I know this is not easy but you would have a shock how many do...or ring your rheumy secretary it should be on the net for your hospital...and ask for another appointment then at least you can then ask for another opinion...I do find the secretary's very helpful at my trust.
    I do hope you get some help very soon xx
    Love
    Barbara
  • salamander
    salamander Non-active member Posts: 1,906
    edited 30. Nov -0001, 00:00
    How distressing for you Victoria. Personally, I would ask my gp for a referral to another rheumy, maybe at another hospital. You could do a little research and see if there is a specialist in the country you would like to see and ask for a referral to them. What area are you in?
  • deedeeitsme
    deedeeitsme Non-active member Posts: 321
    edited 30. Nov -0001, 00:00
    I am so sorry to hear this but unfortunately for us this sort of thing is getting quite common. I was in the same position as you are now. My first rheumy did xrays, saw inflammation in the sacroilliac joint, some sclerosis and other irregularities. He made an appointment for an mri and said we would discuss the xray findings and mri results at my next appointment. I thought great, they can't argue with evidence which is in front of them and maybe I was on the way to getting things under control. Oh boy was I wrong!! Next appointment came, first rheumy had left the practice and was now working abroad :o . Second rheumy dismissed everything that the first had said, and shown me on screen and without examination she diagnosed me with fibromyalgia!! When I questioned her about the first rheumys findings she just shrugged her shoulders and said "well". That was it. I was fuming and very upset to think that I was getting somewhere at last to be back to square one. Subsequently I went to see my gp, explained the situation and asked him to send me for a second opinion at a different hospital which he did. Still no diagnosis as yet but I have not been discharged and I am still under investigation. I know these things can take time, sometimes years, but I am happy to plod on as long as I being taken seriously and investigations are ongoing. I am having a steroid injection into my hip on monday eeeeeeeeeek. I hate needles :cry:

    Oh I rambled a bit there, sorry. What I am trying to say is yes, ask for a second opinion without a doubt. I asked my gp to refer me again so you should be able to arrange it through your gp but please do it.

    Take care and please let us know how you get on with this. Dee x
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I think that diagnosis is very much a matter of personal interpretation, you could show three rheumatologists the same set of test result and get three different versions of what is happening. In your case, however, something has gone very wrong indeed and I think a fresh start would be helpful. It can be difficult as a patient to speak up against the views of the 'professionals' but sometimes it's necessary. We need to know what we are taking, why we are taking it and have the confidence to challenge when the need arises. That's far easier said than done but I've learned the hard way, over my arthritic years, to do just that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • VictoriaLouisa
    VictoriaLouisa Non-active member Posts: 15
    edited 30. Nov -0001, 00:00
    Many thanks for all your replies.

    I am drafting together a letter for the hopsital and I've also asked for my medical records.

    It is very difficult as Dr B........ is supposedly an expert and also acts as an expert witness for legal cases, but he basically rubbished Dr S.... (the first Rheumy) and the Ortheopeadic surgeons to us in my appointment. I was actually embarrased as to how to reply to him, especially as I have found Dr S to be such a good doctor in the past. Basically, he is saying she messed up big time. He also said my GP was an idiot (actual words) yet my GP is brilliant. I'll post how I get on over the next few weeks. Thanks so much for all your replies.
  • salamander
    salamander Non-active member Posts: 1,906
    edited 30. Nov -0001, 00:00
    Good luck with your letter. He does sound very arrogant!
  • kathe
    kathe Non-active member Posts: 183
    edited 30. Nov -0001, 00:00
    Best wisches to you :-)
  • dibdab
    dibdab Non-active member Posts: 1,498
    edited 30. Nov -0001, 00:00
    Sounds like you had a horrible experience! :( You might find that the Patient Liaison Service at the hospital can help you- I had their help to change Rheumy as the 1st was so dismissive and only looked at bloods, never listened etc- my new rheumy is superb, listens, thinks and investigates- so much different and I am so thankful I was able to swap.

    Hope you get the help you need very soon- be persistent!

    Deb x
  • VictoriaLouisa
    VictoriaLouisa Non-active member Posts: 15
    edited 30. Nov -0001, 00:00
    Many thanks for your responses, it really helps to know other people have been through the same thing.

    I've been sleeping downstairs for two nights as I can't get up the stairs at the moment. My next door neighbour - is 25 years older than me - has just gone off to her daily gym session, but the Rheumatologist makes me feel guilty for wanting a better life at 40

    I wonder how he would manage with our problems year in year out.
  • CJHunter
    CJHunter Non-active member Posts: 1,038
    edited 30. Nov -0001, 00:00
    VictoriaLouisa wrote:
    Hi there, I am having a bit of trouble at the hospital. 20 yrs ago I was diagnosed with Raynauds, and Antiphosolipid, malar rash, discoid lupus and photosensetive rash and I often have positive ANA tests. Over 10 yrs ago I was diagnosed with Psoriatic arthritis, and OA by a female Rheumatologist. I took disease modifying drugs for years. A couple of years ago I saw another Rheume in the same hospital (they now share a clinic) and he was very dismissive from the start. Last year ortheopeadic said I needed two new knees but due to only being 39 they didn't want to do them so soon, so said it was up to Rheumatologists to keep the underlying disease in check. I went to see the "new" rheumatologist last week and he said that the first Rheumy was incorrect in her diagnosis, I don't have Psoriatic arthritis, only OA and that I should never have taken Methotrexate etc (there was some liver damage whilst taking it) and he said he was dismissing me from Rheumatology clinic as he couldn't help me. MY GP was really shocked, I've no meds from the hospital but the GP has given me steriods to cope during a flare. Do you think I should write to the hospital and ask for them to arrange another opinion, as it seems mad that two Rheumatologists in the same dept can disagree with each other and I end up in the middle, and how do I know who is right?. Any thoughts would be appreciated. Many thanks.

    OMG this is my case all over!! im going through a re diagnosis /treatment/ guinea pig thing too. I have had 4 consultants all diff opinions and one sitting on fence, .
    It might be an idea to go to a different hospital for another opinion, although it didnt work for me it may for you, I wish you so much luck in finding treatment that helps and a rheummy that helps too xxxxxx
    Clare xxeyeore-1.jpg
  • VictoriaLouisa
    VictoriaLouisa Non-active member Posts: 15
    edited 30. Nov -0001, 00:00
    Hi Claire, I really am sorry that so many of us seem to go through this cycle of "different doctor, different opinion".

    15 years ago I had one rheumatologist say to me "go home and have a baby it will take your mind of things" and then he wrote to my GP and said I must be abnormal and need psychiatric treatment as I was 25 and still childless - so nothing a doctor says suprises me now. My husband thought we had stepped back 100 years in time !!

    Just a relief to know I'm not the only one going through this, I just hope you get some joy eventually.
  • CJHunter
    CJHunter Non-active member Posts: 1,038
    edited 30. Nov -0001, 00:00
    You too xxx
    Clare xxeyeore-1.jpg
  • ritwren
    ritwren Non-active member Posts: 928
    edited 30. Nov -0001, 00:00
    Victoria Louisa I really feel for your and agree it's good if you get a letter off to complaints and patient liason as well as a new referral from your GP. Your treatment has been shocking. I do hope you get some ease over the next few days and are able to manage the stairs again. Have you got adequate pain relief at home in the meantime?.
    Big hugs.

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