Help getting a diagnosis???

Hi

I have a number of symptoms. My GP first thought it was rheumatoid arthritis in my hands, but all the tests, scans and x-rays came back negative for that. My hands still swell up and are painful at times. My shoulders sometimes hurt - GP thought that was frozen shoulder. Small joints in my feet sometimes hurt. Sometimes my ribs hurt. I have had a few episodes of really painful lower back to the point where I can't sit, stand or lie for any length of time; and occasional neck and other joint pain and stiffness. General muscle aches all over too. These pains come and go sometimes lasting only for a day or two, sometimes for longer periods. I had a really bad rash across my cheeks and nose for a couple of months at the end of last year, this has now subsided a lot but still exists on my chin and forehead. I get extremely tired at times, I get migraines and headaches. I often have mouth ulcers. I've also had a number of bouts of tendonitis - ankle, and elbow MY GP did a blood test - anti ds DNA, which the lab reported as positive at 29. So I had a referral to a rheumatologist. I saw him last week, spent less than 5 minutes with him, he didn't give me time to list all my symptoms, asked me to get on the bed and checked my knees, ankles and neck by moving them from side to side. Then he said "we take no notice of the anti ds DNA test there's better tests we can do" . He also said that my fluctuating ESR levels were due to my weight. Then he said it wasn't lupus and decided to refer me to a dermatologist for the rash. He did ask for urine and other blood tests. Two days later I got a letter in the post from him saying it's not lupus, but he hadn't even got the better blood test results! Do I go back to my GP and ask for a second opinion???

13 Replies

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  • I also have problems with my jaw joint on the left hand side. I have been told by 2 different physios that I also have hypermobile joints.

  • My goodness, that seems very quick session with Rheumi are they always like that I wonder. I am waiting an appointment to see one, had to fight for it as been diagnosed with fibromyalgia 4 years and the doctors happy it's that!. I hope its not that quick as I have a few questions to ask too. No wonder they have problems diagnosing if they see patients that quick.

    Best of luck to you x

  • That seems a rather fast and off-hand rheumy. Mine isn't brilliant at following up, but I initially had many more thorough tests and investigations. I'd definitely ask your GP for a second opinion.

  • Thanks. The clinic was running behind on the day. I think he was trying to catch up. But it's left me feeling very frustrated.

  • Hmm. I have no idea why he was in a rush, but shame it left you frustrated and still unwell. Interesting that my early travels through rheumy resulted in no letters or info to me, while your rheumy is able to get a (negative) letter whizzed off to you. Different parts of the country? Admin here is very bad/long delayed. Took about three months after they discovered my vit D3 was seriously low for a letter to get to my GP to tell him to sort it out.

    I'd still be inclined to ask your GP to enquire or for second opinion. An instant "diagnosis" before tests does not seem right.

  • Yes. My appointment was 11:30 lady Wednesday. I received the letter Friday morning. The letter is dated the same day as the appointment.

  • I think I would discuss this with your GP. A first appointment in any clinic is usually considerably longer than 5 minutes (are you sure about the time?) A full clinical history should be taken for a first visit - not necessarily by the consultant, a minion usually gets that job - and a full physical exam. Because of that, first visits are usually placed at the beginning of a clinic - you should be the cause of running behind, not made to suffer for it! Then the rheumatologist may order further tests, if they are good, explaining some of what is going on. Some tests may be done there and then and you have to come back to clinic if the results are immediately available. And after all that, you should be given a follow-up appointment to discuss those results and how to proceed - some tests take a few weeks and there isn't a lot of point without having them.

    It may not be lupus - but it certainly sounds something autoimmune and now you have been referred it's his job to investigate and decide which is most likely. And one path of complaint would be via PALS at the hospital.

  • I have a similar story to yours, so I have now found a Doc who specialises in Sjogrens which is a very similar disease to lupus and I have a referral as I asked my Gp for it. I have been getting worse over the last 18 months whilst my rheumy has done nothing. Last time , she told me to get happy and go swimming!

  • Lost for words ... get happy?!

  • Totally agree with PMRpro. That was very unusual procedure for a first consultation. I would go to your GP explain what happened and see if your GP has received a letter of explanation yet, that may shine a light on it. If you remain unsure go to PALS.

  • Hi Guinea21,

    I'm sorry to hear about your negative experience with this rheumatologist. As others have already suggested, it is worth asking your GP to refer you to a different rheumatologist for a second opinion. Perhaps it is worth asking for a referral to somebody who has a specialist interest in lupus? If you let me know what area you live in I can provide you with information about any lupus specialists near you that we may know of.

    Out of interest, did the consultant say what the 'better tests' than anti-dsDNA were? Anti-dsDNA is a highly specific antibody for lupus and a positive result is used as one of the 11 manifestations used as criteria for a diagnosis set out by the American Rheumatism Association.

    As PMRpro has suggested, if you wish to complain about the service you received, the hospital's PALS team may be a good place to start. You can find them here - nhs.uk/Service-Search/Patie...

  • no, he didnt say what the better tests were, and made his diagnosis before doing these. although i did notice on the form that he put c3 and c4, among others.

  • Had a further letter from the rheumatologist. Apparently my c3 and c4 levels are 'normal' although I don't know what the actual values are. But my vitamin D levels are low, around 26, so he is going to ask my GP to prescribe something, and to work to getting the level up to around 50.

    This is really frustrating, as all I want is to know what the problem is so I can sit down with my employer and explain how this sometimes affects me. At the minute all I can tell them is I sometimes get painful, achy joints, stiffness, facial rash and episodes of extreme tiredness.

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