problem getting a diagnosis

rella1965
rella1965 Member Posts: 34
Hi there

This is a long story but last december 2008 was positve for rheumatoid factor after having pains in hands and feet. Went to rheumy (horrible man) The flare had gone off by then I was found to have Vit D deficiency and low calcium all other tests came back normal. He then referred me to endocrinologist and shut down my rheumatoid clinic, as he thought my symptoms were caused by surgery I had in 1997 for thyroid removal. At least I assume that is what he thought as the only thing he ever said to me by way of a dagnosis is "its the surgery"...Asked him to refer me for second opinion to another rheumy in another hospital.

Eventually got to see Endo (nice woman) who said the malabsorption was nothing whatsoever to do with my suspected RA symptoms, and she has now brought my vitD and calcium to normal levels just by calcichews. She has always maintained she thought I had RA. Both my GPs agree I am in acute stage of RA.

Had to wait month and months for my second opinion appointment, got to see them in June in a flare up. I am in a terrible state, just on painkillers and diclofenac, joints getting worse and worse and has spread to my jaw, hips and knees. Been off work for two months and no sign of flare up going off at moment. Just had a letter for second appt tis now at the end of September. I am really depressed about all this and really want to make a formal complaint What should I do? This would be exactly a year after I started having symptoms.

Comments

  • helpline_team
    helpline_team Posts: 2,769
    edited 30. Nov -1, 00:00
    Dear Rella,

    Thank you for getting in touch with us at Helplines. I'm sorry to hear that things are so inconclusive and prolonged.
    In terms of blood tests your GP can do many of the necessary tests that might give a fuller picture e.g.
    ESR
    CRP
    CCP
    These show various kinds of inflammation and are an important part of the picture. Often the purpose of rheumatology drugs is to get these levels down if elelvated.
    Also helpful can be xrays of hands and feet - to monitor for signs of joint damage.

    We've got some important information on self-management which might help you argue to get more done if you feel it's going too slowly. If you e-mail [email protected] (with your name and postal address) and explain you contacted us on the forum we can send more about these issues.

    For information about complaining we suggest you contact PALS at the hospital or NHS Direct 0845 4647.

    You are of course welcome to ring us to talk us about arthritis - just ring our freephone.

    hope that helps
    Guy
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi been having problems going back years with lower back on right side where back and pelvice join one doc said u have weekness there and gave me some anti in flam tablets. then right hand started was told wear and tear eventually got good gp who got bloods done as well as looking at hands (back not been bad when had app.) had 3 blood tests in a month as was bit out . showing inflamation on each, also the one i had a month later . so given more anti inflamation tabs she thinks i have ostio arthritus can she tell this with just the blood tests.also she just sent me 4 another blood test as am bruising badlly she thinks that is the anti inflam tabs but was just double checking.
  • rella1965
    rella1965 Member Posts: 34
    edited 30. Nov -1, 00:00
    OK so if my GP does these tests and finds some raised results, what happens then, can they then offer me some treatment to try and control things? instead of the rheumatologist?

    I Have had many xrays, bone scans and ultrasound, one of which showed synovial thickening in my toes, however the first rheumatologist said this wasnt significant. Otherwise my joints arent damaged as yet by arthritis, although I did have osteomalacia which is now being treated with calcuim and vit D.

    I saw my works doctor yesterday as I have been unable to work for two months, who was very helpful and he thought I also had inflammatory arthritis. He says that because they found something else wrong it was a kind of red herring which diverted the attention away from the arthritis, and he shouldnt have discharged me from the rheumatology clinic. WOuld making a formal complaint againt the first rheumatologist help help me speed up anything?







    Dear Rella,

    Thank you for getting in touch with us at Helplines. I'm sorry to hear that things are so inconclusive and prolonged.
    In terms of blood tests your GP can do many of the necessary tests that might give a fuller picture e.g.
    ESR
    CRP
    CCP
    These show various kinds of inflammation and are an important part of the picture. Often the purpose of rheumatology drugs is to get these levels down if elelvated.
    Also helpful can be xrays of hands and feet - to monitor for signs of joint damage.

    We've got some important information on self-management which might help you argue to get more done if you feel it's going too slowly. If you e-mail [email protected] (with your name and postal address) and explain you contacted us on the forum we can send more about these issues.

    For information about complaining we suggest you contact PALS at the hospital or NHS Direct 0845 4647.

    You are of course welcome to ring us to talk us about arthritis - just ring our freephone.

    hope that helps
    Guy
  • helpline_team
    helpline_team Posts: 2,769
    edited 30. Nov -1, 00:00
    Hi valval

    I've just responded to you on the other thread too. From what you have written here re the 'wear and tear' it seems that they have thought it to be OA for a long time. Regarding the bblood tests, again it may be a good idea to ask what they are testing for. As you are bruising badly have they tested your vitamin and mineral levels? For example iron or calcium levels.

    If they were testing for any other type of arthritis you would have to have a number of different blood tests, as one type on its own would not determine a diagnosis.

    If the pain persists to be unbearable it may be a good idea to get a referal to a pain clinic.

    I hope that helps to clarify further.

    Best wishes

    Simona
  • helpline_team
    helpline_team Posts: 2,769
    edited 30. Nov -1, 00:00
    rella1965 wrote:
    OK so if my GP does these tests and finds some raised results, what happens then, can they then offer me some treatment to try and control things? instead of the rheumatologist?

    Hi Rella

    I'm sorry to hear you are in such a painful state.
    Unfortunately your GP would not be able to prescribe more than what you are currently taking. Although it may be worth talking to them about dosages and better pain control untill you get to see the rheumatologist. Inflammatory arthritis drugs will only be prescribed by a rheumatologist. September is a long time to wait so it may be worth ringing them to see if they can see you sooner or at least put your name down incase there is a cancellation. In the meantime if you have a supportive GP or works doctor ask if they will write a letter to speed things up to say its urgent.


    WOuld making a formal complaint againt the first rheumatologist help help me speed up anything?


    Unfortunately the process of making a complaint is a lengthy one and very difficult. I doubt if it would speed up the process of your treatment. The most important thing for you right now is for you level of pain to be managed to help you de-stress. It sounds like this has all made you very upset and frustrated - and understanably so. However stress and anxiety just heighten the pain and symtoms so please try to look after yourself. In the meantime tap into the resources around you ie you GP and works doctor to help speed up the next Rheumatology visit.

    Although we are not doctors and we cant prescribe medication to you, I can inform you that a recent study done by the Arthritis Reseach Campaign showed that Fish oils have a good effect on reducing inflamation in RA. So you may want to consider taking them as a supplement whilst you are waiting.

    If it would help to have a chat or just a good offload please feel free to give us a call.

    Best wishes

    Simona
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    Hi valval

    I've just responded to you on the other thread too. From what you have written here re the 'wear and tear' it seems that they have thought it to be OA for a long time. Regarding the bblood tests, again it may be a good idea to ask what they are testing for. As you are bruising badly have they tested your vitamin and mineral levels? For example iron or calcium levels.

    If they were testing for any other type of arthritis you would have to have a number of different blood tests, as one type on its own would not determine a diagnosis.

    If the pain persists to be unbearable it may be a good idea to get a referal to a pain clinic.

    I hope that helps to clarify further.

    Best wishes

    Simona
    hi thanks 4 that will do that if needed big help sorry it ended up on here pressed wrong button lol

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