just been diagnosed thru my dermotologist and been referred to rhuemotologist dont know what to expect

have felf like going mad and embarressed going to my gp and hosp app and finally got diagnosis feeling scared at moment and stressed which is causing horrendous headaches painful joints my vision getting flashes all the time by the time of afternoon i am scuttling around. dont know what to expect from my first app with rhuemotologist will i get scans, more bloods dont know dont have much faith at moment

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  • Hi farah 1, allI can say is don't expect too much. Write down any questions you want to ask and try get someone to go with you to appointments. You will need lots of patience aswell, I hope your rheumy is a good one. Let us know how you get on and I hope you feel better soon.xx

  • I've had a couple of appointments with the rheumie, MRI and ultrasound scans, steroid injections in one shoulder - but no diagnosis yet. Rheumie prescribed Plaquenil, which I've been taking for a few months and I think I'm starting to see a bit of improvement in my skin and the coughing/poor lung function doesn't seem as bad recently. I've spent the last few months getting as much info about Lupus as I can. When I go to my next rheumie appointment I will have a list of questions and hope to get a bit closer to a diagnosis. After years of symptoms that weren't really being taken seriously by my GP, I actually feel a bit more positive just knowing that the condition is being monitored. Keep your chin up farah 1, it seems like this is a condition that needs to be dealt with one step at a time.

  • Hi Farah1,

    The time around a diagnosis like this is very scary and confusing. If you'd like I can send you one of our free information pack which does include some information on what to expect from Doctors' appointments and how to make the most of them as well as information about lupus.

    If you'd like a pack please just send me a private message or email paul@lupusuk.org.uk with your name and address.

  • Hello and welcome to lupus.

    Dont spend a lot of time an energy trying to second guess the future. Lupus is a very personal illness, in as much as we each have our own version of it. Your path may be similar to many but it is unique, dont read too much into any one persons account and dont look for the worst case scenario. It is what it is.

    Better to invest your time if finding practical ways of dealing with the different aspects on a day to day basis.

    Good luck

  • i was diagnosed in august, i have a very good dermatologist and my gp has been brill too he referred me to the rheumy who ( icant believe im saying this) was also really good (hope im not jinxing myself) lol, at my first and up to now only visit i had a chest xray, blood test, an urine test, he was very understanding and sympathetic answering my qustions an didnt talk down to me, he was lovely, my next visit is in january, which to me is good cause so far so good,,,, i do suggest writing any questions down cause if your like me youll def forget...........all the best flower xxxxxxxxxx

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