Can you get diagnosed with sle then again to be not diagnosed l am very dissapionted in the rheumy doctor

[kgreig]

hi guys not been on for a few days, I went for my hospital app today it got brought forward due the severe pain and me falling recently, so I don't know if you remember but I got it in writing in November that I have got sle and arthritis.I have been to the hospital and the doctor DID NOT listen to me at all. Everyone said write things down Kay so you won't forget to tell them what's wrong, well I did that but she didn't want to k ow she asked me lots of questions about my lower back pain ( I also have slipped disc) or something like that and she said do you know you have this, I said yes but that's not the only thing that's happening to me , I tried and tried to tell her about my fever and red face if I do too much, my swollen hands and feet, my extreme tiredness and I really needed something to help as I go on holiday next week and my eyes swell up like two balls because of the sun I get this every year,and my not sleeping but she said it's a circle and all based on you not getting enough sleep so she has given me sleeping tablets even though I didn't really want them ,told me I can't have anything for my sun allergy as she has done more blood tests and to wait till they come back then told me to try and excersice so I told her I can swim but havnt done for around 3 weeks so I will do this twice a week . I feel like she has in a roundabout way said your not fit and that's why you have pain as your over weight I am 5,6 and weigh 13 stone I don't eat much chocolate or crisps and tend to watch what I eat , I also don't drink alcohol that often or smoke , sorry guys for ranting on like this but I have come away today feeling very dissapionted in the system I really don't want to see her again, can you get diagnosed then not diagnosed ;((( as she said she's taking the blood tests to test again for sle I told he ri got told in November but she said she knows this but doesn't think my symptoms are due to this , she just didn't listen to anything I tried to say ;(((((((( hope you guys are all holding up and have a great Easter holiday x x x x x

[lupylucy13]

Hi kgreig, I am new to this site but have had mild lupus for 19 years. You could go and see your G.P. and discuss your concerns with him and ask for a second opinion with another rheumatologist. I have had some bad experiences with Docs too, sometimes they can be having an off day or they can be stressed and you end up coming away disgruntled to say the least ! Sometimes taking a friend in with you helps for a bit of support.

I hope you have better luck next time ! Enjoy your holiday !

Lupylucy

[kgreig in reply to lupylucy13]

Thanks lupylucy I really came away very disheartened not that I was pleased to have been diagnosed last year but I knew I wasn't imagining things then to be made to feel like a lazy no good for nothing by someone who wants to re test me and tell me to excersice and not want to help with any of my other problems is a kick in the teeth, but yes I will speak to my doctor and tell them I don't want to see her again, thanks again, have a great Easter holiday x x x x

[Hidden]

Kay - if I thought I could be undiagnosed - I'd be jumping for joy. There is nothing great about having lupus - it's horrid and I'd give it up tomorrow if I could. I know you feel that she didn't listen but she has done more tests, so she is not dismissing you, or disbelieving you but just wants to, and hopefully will, eventually get it right. "having it in writing" doesn't really mean anything....

I was told first I had RA and then that I had 'inflammatory arthritis', and then that I had MCTD ( I didn't believe any of it - How could I have an incurable illness?) Eventually I got very ill after getting sunburned on a camping holiday, they said it was lupus and sadly that seems to have been right. Even so - I refused to just sink into it - and so should you. Anything you can do to make yourself feel better you should do. I know it is hard when you are in pain (and it is SO cold!) but whether it is lupus or something else - you have the rest of your life to get on with! One day at a time - get the things done you can get done, and try to have some fun when you can.

Take care, Kay (and try to look at the good things about being told you DON'T have Lupus).

[kgreig in reply to Hidden]

Hi MaggieS

Thanks for your feedback , I am delighted she has done more blood test today but am just concerned that she wasn't interested in any of my other problems I am still young and am not unfit as I told her I used to swim every week just up until 3 weeks ago I have a family and work full time so I do the best I can and have done for over ten years with this so it's not something new to me you just learn to get on with it, but she just didn't listen at all to me ..... I havnt been told I havnt got it she just wants more tests which is fine but she made me feel lazy and like a hypacondriact (sorry about the spelling) when I know I'm not, I will be so pleased if I don't have this all I want is a way to keep going without the pain every day I get and have been for years just a wee magic pill would be nice , and an answer to why I'm like this is all I ask, not to be told all different things by the people we trust, but I will let you know, I just didn't know that when you have lupus then maybe it might go away .. that's all, have a lovely Easter x x x x x x

[Purpletop]

It is easy to do this, get in all armed with info and then not be able to go through the bluster a doctor throws at you. I've learnt my lesson and now I'm going in with one goal and one goal only - to get an answer for each of the symptoms on my list. If the doctor tries to go away from the subject, I leave it a second and then interrupt by saying "I'm sorry but I can't remember what the answer was to my question, can you please repeat why I experience this and what treatment I need to improve it?" and I doggedly do this for each one until the doctor gives up and follows my lead.

You must be livid!!!!!! I agree with Lucy above that you need to speak to the GP if you want to change specialists and when you see the new one, start as you mean to go on. All the best.

[kgreig in reply to Purpletop]

Thanks purpletop yes I was livid and my face still feels as if it's burning ( I mean literally burning) bright red and very hot but this is another thing I tried telling her , but no she didn't want to deal with it she actually cut me off a couple of times and said repeatledy we will sort one thing at a time........ So now I'm all worked up about it and with going on holiday preparing for my swollen eyes yet again. I told her I'm very anxious about taking sleeping tablets as this was all she gVe me today, I told her I work in a bank and can't go to work feeling groggy but she has told me to take them , I don't want to be drugged up!!!!!!!!! Don't know if I should take them or not, but probably not tried them before and hated them , she knows this too ;( arghhhhhhhh take care honey xxxxx

[mstr]

Hi there, bless you it is soooooooo frustrating and I think an incident that many of us on here can relate to. I understand how difficult autoimmune conditions are and that for consultants it is important not to miss anything.......but I think a lot could think about their communication skills. It should be more about active listening (really listening and not hearing what they want to hear) and then explaining things so we understand why they are doing the next round of tests. I think if all of this was explained at the first couple of appointments why they are doing this then we would be more accepting that things take time and why this is necessary. Therefore, because this does not occur we doubt ourselves and think that means that we do not have a condition. In reality they should say that things just take time to evolve. This would lead us not to doubt ourselves, feel like a hypocondriac and then feel like we are in limbo land for another 6 months. I think gathering your own evidence is the most important thing to do in these situations. I took lots of photos of inflamatory joints, hands, ankles, photosensitivity on neck, chest and face, rashes etc. Compile a chronology of your symptoms from the start to take to the next appointment. Ask your GP to compile a chronology too of all your GP visits. Ask your GP to log your symptoms at each visit so that if even no treatment is given it is logged. I asked for a compare and contrast......eg: when was I ever at the GP before this condition, it was once a year if that. Also record your symptoms in a diary too. It seems to take 2 - 3 years to get diagnosed with lupus and it is a frustrating wait. It is particularly hard for you because you have received a diagnosis and have symptoms and then this view has changed. You probably have two choices 1. To wait until your next appointment and do all the gathering of evidence. It may be that the rheumatologist is being thorough and wants to see if it is lupus or whether it is something else similar but perhaps not lupus. For example could it be srogrens, ra. or any other autoimmune condition. 2. To make another appointment with a rheumatologist.

The first rheumy I saw was more reluctant to diagnose me fully and just said I had the symptoms of lupus but I was just on placquenil. After over 18 months I asked for another appointment and was so glad I did. I did have lupus with polymyositis too. Had I left it the polymyositis side would have caused irreversible damage. So thankfully I am now being treated for both conditions with methotrexate. It seems to me that it is a fine balance between waiting a little while and placing some trust in your rheumatologist ......but then there comes a time when you just know something is not right and your instincts will kick in. My advice is to trust your instincts. There is nothing wrong with a second opinion if you are in doubt and it can be reassurring. It is so frustrating I agree xx

[kgreig]

Hi mstr thanks for you advice, most people on here are great with things like this, I don't know how I would cope without this site at the moment , ;)))) have a great Easter holiday my lupy friends x x x x x x x x

[roobarb]

Dear kgrieg

I understand how upset & frustrated you are. I have had this kind of thing happen to me a couple of times, because of seeing so many different rheumatolgoists at my local hospital. It was four different ones last year. Each one seems to take it on themselves to question what the one before has decided upon. Or they concentrate or one symptom at a time, as you say, & it's never the thing that is really bothering you.

I have also read on various sites & blogs about people being diagnosed & then undiagnosed with lupus. I suppose that's why they call it the great mimic. It's symptoms are similar to so many other illnesses, & unfortunately it's not until the illness has progressed that the diagnosis becomes unequivocal.

As mstr has already said, auto-immune conditions are very complicated, so the doctors have got to be sure about your diagnosis. Especially if they are going to prescribe you lupus meds. As I'm sure you know, they are very powerful drugs which come with a long list of potential side effects.

Do you have a nice GP, who you could discuss your concerns with? As others have said, you are entitled to a second opinion. But as the rheumatologist is repeating some tests, they may yet confirm your diagnosis. When do you go back for the results?

Try to relax & have good holiday. Are you going abroad? Protect yourself as much as you can from the sun. Big hats are in right now, so you can be a fashionista, & hopefully stay safe.

Take care, & I hope you get some answers soon. X

[megs_tom]

Big hugs to you!!! Afraid to say I can also relate to this. In fact I am the same height and weight as you, and on my first rheumie appointment I was told I was overweight and that I should excercise and change my diet and then he would see me in 6 months to see if that had improved my symptoms!! Would not prescribe me pain relief or anything! Needless to say, I came away from that appointment very upset and more confused than when I went in and then struggled for 6 months getting worse until the next appointment where he just made me feel even worse. I then asked my gp for a re-referal to a different rheumie and it was the best thing I ever did! I advise doing the same hun, the last thing you need is to feel you are not believed and not being helped. None of us want to hear the words 'you have lupus', who in their right mind would!! All we ask is that we are listened to, helped and given answers as far as is possible. Take care xxxx