How do I get a diagnosis ????

Posted , 4 users are following.

I have been suffering with the following symptoms for around 3 years....neck pain, stiff neck (left side only), shoulder pain (left side only), shoulder blade pain and stiffness that generates into my upper back, and severere headaches. The pain is constant and like a burning sensation. More recently (last five weeks) I have a problem with pain in my left eye/temple area and at the back of my head. Also extreme tiredness. I have been to the doctors on numerous occasions and feel that I am becoming an annoyance. They have tried medication for migrane, blood tests and found that I was slightly aneamic. I get so frustrated with the pain that I generally get tearful when I visit the doctor and so they think I am stressed or depressed. My last visit was five weeks ago because of the pain moving to my eye....before then I had just resigned myself to get on with the pain. I was prescribed amitriptalyne which have not helped at all, but made me even more tired !!!! Out of desparation I made an appointment privately with an osteopath. I have been twice and had no improvement....if anything its worse and more. I am a 42 years old female...what can I do????[/b]

0 likes, 10 replies

10 Replies

  • Posted

    Re-visit your GP and ask him to test you for Polymaelgia Rheumatica and Giant Cell Arthiritis.

    There are standard tests. Sometimes GPs have not come across these two illnesses and because the guidelines on these two - say mainly over 60 - younger people presenting with the symptoms are just not recognised. And these two illnesses do occur in younger people than the guidelines say.

    Insist that you have a full spectrum blood test done. And do it fast.

    And also look at the International Survey website.

    Get cracking.

  • Posted

    You need to make sure they test for inflammation in your body with a sed rate test and a c-reactive protein test. If those are elevated they can also see how you respond to a steroid like prednisone. Most doctors start the patient on 15-20 mg of prednisone. If you have Giant Cell Arteritis (sp?) you would need a higher dose. Most with Polymyalgia Rheumatica respond quickly to prednisone. I am no doctor, but that gives you some idea how to identify or eliminate this possible diagnosis. I was 43 when diagnosed with PMR. There are others here too that were younger than the 50 years of age. Good luck. You might try another doctor is you aren't getting anywhere with your doctor.
  • Posted

    Thank you both for the responses. Do you think it would be ok to actually request these blood tests or does the doctor have to suggest them???

    Alison

  • Posted

    I think I would kindly ask about being tested. You should be able to work with your doctor. If you can't do that then you don't have the right doctor. I believe the doctor/patient relationship should be a partnership. Good luck, Alison.
  • Posted

    Like momto2 if you cannot discuss a situation with your GP - you have the wrong one.

    Just tell him/her you have been discussing your symptons with other people and they suggested that it might be PMR and would s/he be kind enough to arrange for a full spectrum blood test to put your mind at rest.

    If the answer is no - then I am afraid you will have seriously have to contemplate changing your GP.

    mrs k

    PS Email pmrfighters@yahoo.co.uk

  • Posted

    I too struggled to get a diagnosis for months mainly because the blood tests did not show a raised erythrocite sediment level so my GP discounted PMR and treated me for arthritis. It was suggeted that I exercise more but the pain was excruciating afterwards and my muscles began to weaken. I was also considered to be too youmg at 58 to have PMR. I too was put on to amytriptline (an anti-depressant) which was supposed to alter the way my brain coped with pain. Useless! I finally decided to visit a doctor privately and although I undoubtedly do have arthritis (esp in the upper neck) which was adding pain to my debilitating headaches, I was given a trial of 10mg prednisolone and within two days I was considerably more mobile and almost pain free. I improved over a few weeks and over a period of 4 years, I have been weaned off of the steroids. I still suffer with the pain from arthritis in neck, shoulders and knees but I can use normal pain killers at the really bad times. So my message is ask for a trial period on steroids as this confirms the diagnosis of PMR if you respond quickly. Most doctors are not keen to prescribe steroids but what have you got to lose?

    [quote:27703ead06=\"mrs k\"]Re-visit your GP and ask him to test you for Polymaelgia Rheumatica and Giant Cell Arthiritis.

    There are standard tests. Sometimes GPs have not come across these two illnesses and because the guidelines on these two - say mainly over 60 - younger people presenting with the symptoms are just not recognised. And these two illnesses do occur in younger people than the guidelines say.

    Insist that you have a full spectrum blood test done. And do it fast.

    And also look at the International Survey website.

    Get cracking.[/quote:27703ead06][quote:27703ead06][/quote:27703ead06]

  • Posted

    I have had a blood test and that came back normal. GP sent me for an x ray because of the pain in my shoulder and I am waiting for the results from these. I did try and stress that it does not fel mechanical and that I have had no injury to my shoulderand that the pain really doesn't generate from there. I feel despondant and know that this is not going to be resolved. Each time I go to the doctore and try to say what the problem is I come away frustrated and then decide to just go on and manage. My eye is now bothering me the most and pain in my neck and head (left side)each day when I wake up I wonder how much pain I will have. I have made another appointment for Wednesday but I already feel its a waste of time. Whats the right thing to say ??? If anybody knows I would be grateful.

    Thanks Alison x

  • Posted

    Alison

    Ask for a second opinion and also stress that pain in the left eye and in neck and head are dealt with. I know that you are not entitiled to a second opinion but sometimes GPs agree when a patient requests this. You could also ask for a referral to a Rheumatologist.

    Explain to your GP that you are extremely worried as the pain has now spread to your eye, neck and head and you have heard that these are symptoms of temporal arteritis. Could he please put you on a dose of steroids and see if the symptoms go away.

    Please be firm and persistent.

  • Posted

    Hi...Thank you for your reply.

    I went back to the doctors this morning. He actually said that the blood tests had not come back normal, unlike the receptionist had told me. There is a rise in esr. So he did another esr and ck (?!) test today. He wants to refer me to a rheumatologist. He is also chasing up the x ray's I had taken three weeks ago.

    Anybody know what a ck blood test is ???

    Thanks again

    Alison x

  • Posted

    Alison,

    Could be a Creative Kerase test to check that statins are not causing the pain. Or it could be a C Re-active Protein test.

    It is good that the GP is referring you to a Rheumatologist.

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