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Not sure what to do next.

Posted , 3 users are following.

Jan999
Jan999

It's almost 4 weeks since I had my appointment with a rheumatologist. I was referred because I had joint pain and a blood test revealed I had a slightly raised Rheumatoid Factor. My shoulder was particularly painful and I had limited mobility in my right arm because of this. At the appointment I was given a steroid injection in my shoulder and it did help. I had numerous blood tests and X-rays of my shoulder and knees. Up until this appointment I presumed I had RA but the rheumatologist said she didn't think this was the case and wanted to see the results of my blood tests and Xrays. I then stated to put two and two together. I had all the symptoms of Lupus. Raynauds, hair falling out, rash, forgetfulness, tiredness. I could go on. But despite this was almost 4 weeks ago I've heard nothing. I was told not to make a follow up appointment and they would "be in touch". But I've not heard a thing. I am so confused and feeling so unwell I don't know what to do. My joint pain has moved to other joints. They are so painful I'm not sleeping very well. And the tiredness is overwhelming. Any advice please?

0 likes, 9 replies

9 Replies

  • valerie76537
    valerie76537 Jan999

    Posted

    hello there....I have also experienced the long waits before receiving results...in fact if they do suspect lupus the relevant blood tests do take much longer as there has to be repeated analysis i think this is a specklegram with test droplets added to identify the effecton the original, and thus eventually giving a conclusive result after weeks rather than days.....this may be the case foryou....my end result ofthese tests and a referral for physical examination by rheumatologist gavemixed connective tissue disease with predominantly lupus features..including sjorgrens and reynauds......your pain, stiffness and tiredness symptoms sound very similar.but its dangerous to make non professional comparisons...there are many variations which can be treated...in the meantime check whether youcan take paracetamol as a base line pain killer whileyou await results; it can help.

    I suggest ringing your GP and/or rheumy's secretary to catch up withwhat is happening.....I have done that and they are usually very helpful .....good luck.....

    • Jan999
      Jan999 valerie76537

      Posted

      Thank you valerie. I do have paracetamol, Nefopam, codeine and Naproxen prescribed by my GP (I don't take them all at once lol). I agree when you say not to make comparisons but it's a habit all of us nurses have unfortunately. My friends all agree my symptoms are typical of Lupus and one of my friends has a husband who is a consultant in medicine. Although he hasn't said so much to me I know what he's thinking and saying to my friend. Anyway I'll take your advice and ring the hospital tomorrow. It's almost 4 weeks since my appointment so I think that's reasonable. Thanks again.
  • leona18728
    leona18728 Jan999

    Posted

    Hi I can sympathise with what your going through, I have similar symptoms and have had lupus for over 10 years and have had fybromyalgia for the past 5 years,

    I go to my GP who looks at me as if I have two heads,

    My rhymatologist gives me steroid injections and sympathetically tells me how poorly I am and says I will see you in three months time, no need to book we will send one in the post, but still I don't get one, I was due an appointment early last December,

    It's no fun not feeling well and worrying about your results,

    I advise you to telephone rhumatolagy tomorrow and remind them, I'm certainly going to, we are important.

    • Jan999
      Jan999 leona18728

      Posted

      Thank you leona I will. They see hundreds of patients every month. It must be so easy to forget about a few. Good luck when you phone tomorrow.
  • Jan999
    Jan999

    Posted

    This is an update on the progress I've made (or not) on obtaining information regarding my blood tests and Xrays. I spoke to the consultants secretary on Monday but she said she couldn't access my records because the "system was running slow". Likely story I thought but give her the benefit of the doubt. She said she would ring me later in the day. So I sat all day with the phone nearby not daring to go out. Nothing and the same the next day. So on Wednesday I decided to ring again. Oh she was so sorry but the consultant hadn't had time to do her clerical work but was going to work late on Thursday to "get on top of it". She would ring me at the end of the week. Well she didn't say which week did she? I intend to ring again on Monday and tell her I would like my blood test results and the results from my Xrays. I am sure I'm entitled to them. It's almost 5 weeks now and my friends husband who is a consultant in another area assures me they will be back. So await the next update.
    • leona18728
      leona18728 Jan999

      Posted

      Hi matron, I'm so sorry to hear you have had such a frustrating and disappointing week,

      You are obviously very anxious awaiting your results without the added stress you are experiencing from not being listened to,

      Do telephone again on Monday say you appreciate how busy she and your consultant must be, but after three calls last week you feel your not being taken seriously and that your finding it stressful, and this is not helping how you feeling at the moment, enfersise your not after an appointment at this stage you just need reassurance that your blood results and X-ray results are ok, or if not you would like to know what they have revealed and what's the next plan of action,

      If they say they will ring you back repeat back to them

      Your ringing me back this morning/afternoon, you will defiantly ring? Do you want me to repeat my number? And if nessesery if they say morning for example say they need to phone before 1pm as you've an appointment, or if they say afternoon say I will be home after 1pm

      This way your not waisting your day waiting for the phone to ring as this will only stress you out even more,

      Be polite but firm it's your body your life, you need answers and your entitled to them.

      Good luck keep me updated

    • Jan999
      Jan999 leona18728

      Posted

      Thank you leona for your advice. I will definitely take it on board and when I ring the consultants secretary on Monday I will be so polite but ensure she doesn't just fob me off by pinning her down to specific time scales. You've certainly helped me think it through logically. Thank you.
    • leona18728
      leona18728 Jan999

      Posted

      Your welcome, thoughts will be with you on Monday.
  • Jan999
    Jan999

    Posted

    Hello everyone. I managed to speak to the secretary, at long last and she told me the rheumatologist had written to me stating that my Xrays showed I have osteoarthritis. I asked about my blood test. She didn't know anything about them. Miraculously the following day she rang with an appointment for the next day but to see the registrar. So I went and she asked me all the same questions again and I told her I thought I had Lupus and asked for my blood test results. One antibody was positive, the antiphospholipid antibody but the blood test for the antibody related to Lupus wasn't reported on because there was insufficient blood in the vial. Why didn't they ring me? Well I've had it repeated and more Xrays, this time my hands and feet. As you can imagine I'm not happy!
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