Waiting

Following 4 months of illness. 3 stays in hospital and a million scans and blood tests my respiratory consultant told me yesterday that he's pretty sure I have lupus. All of the relevant blood tests were positive etc. I have an apt with a rheumatologist next week but in a different area so they won't have access to my medical notes and results etc. I don't really want to have to do all the tests again but am eager to get a quick diagnosis and treatment. Any suggestions?

18 Replies

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  • Just get your current doctor to give you copies of all the test and scan results and take them with you when you see the new person.

    From experience, however, unless the tests were done within the months, the rheumatologist is likely to ask for new ones anyway. Even if they are recent, the rheumatologist might still want to do new ones because he/she would rather have them done by a lab/technician he/she trusts.

    But if at the end of the road you have a diagnosis, all this is worth it.

    Having said that - it's still worth asking the respiratory consultant for test results copies and if there are others with other departments, you better hurry as many gear down for Xmas now.

  • Yeah all the tests were done during an 11 day stay in hospital in September

  • Then you need to contact the Information Governance department (all hospitals have something like this) and ask to get the copies ASAP. They might ask for £10 off you - that's because under the Data Protection Act you are entitled to your information but if the provision of the information includes expense, then the hospital has the right to recover that cost up to £10. In this case it isn't much of an expense unless you ask for copies of the scans on CD but the hospital may have a blanket policy of £10 for each request, regardless.

    They aren't very quick, so I'd get on the phone now and stress the urgency. You might need to provide a copy of an ID.

    It sounds a lot of kerfuffle but that's the alternative if you want to avoid the tests done again.

  • Hi Neiluck75,

    As regards your scans there is a national radiology storing system called PACS. It may be that your new Rheumy can view your scans via this. Certainly in Scotland this is the case.

  • Well the fact u found out in months, should feel lucky. Most take years for positive diagnosis. I'm personally going into my 4th year & finally this last year got positive tests. That was after being told I'm just depressed, stressed or just loosing it the whole time. The word Quick unfortunately does not go with lupus at all. Lol good luck!!!

  • No from reading on here I know I'm lucky it's been quite quick. I think all the time in hospital sped things up as they kept me in so long doing tests trying to get to the bottom of it. I had mass infection of my organs. Pleurisy. Pleural effusions. Pericarditis (twice) constant fever. Severe weight loss. Had biopsy for lymphoma. Luckily my hospital are pretty thorough and think it helped that my doctors were a bit fascinated to what was making me so Ill when their tests kept coming back negative. Then they did the ana which was positive then the dsdna which came back very high at 827. So they did all the other lupus tests which came back positive aswell. So attack from all fronts I think

  • Bring your lab test result medical records to the appointment to speed things up.

  • I have to put it in writing to my gp so that will never happen by Monday. My consultant said to get them to call him direct so will probably try get him to do that. He also scribbled down all my test results (typical doctors handwriting) so at least have something

  • Make sure you bring the test results he wrote plus all your medical provider contact info, drug info, emergency contacts and history info. Good luck.

  • Yeah I've got as much written down as I can think of

  • Wow. Where did u go, I need that place! All my docs are horrible. They're all in training and the real docs don't care enough when they check in. That's great your getting such great care at least. Sorry your joining the lupus family. But at least were here for each other. This is the only time I talk about it, finally...and it helps. I don't "whine" as i call it, in actually life. Lol

  • No I know what you mean. I drag myself out of bed pull on a smile and try and stay awake as long as possible.

  • I just thought about it & its actually been 6 years! And I'm still not medically diagnosed. Just this last year finally got 4 positive tests.

  • Just have your new Dr request your records, prior to your visit or you can request them yourself

  • Hi Neiluk75,

    Welcome to the site. It looks as though you've received some really helpful advice from other members of the community so far. Please let us know how your appointment with the rheumatologist goes.

    If you need more information about lupus, we have a free pack that you can request or download at lupusuk.org.uk/contact-us/

  • Saw the rheumatologist today and she confirmed its lupus. Started in some medication and will start some more when I see her in 4 weeks

  • What new meds did doc put u on?

  • Started on steroids to go with the anti inflammatorys I was already on. Am starting hydroxy sommat or other when I go see her in two weeks but I need an eye test first. The steroids haven't really helped

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