Does everyone struggle with trying to get diagnosed?

I am struggling to get a confirmed diagnosis for SLE. My consultant agreed with my dermatologist on the evidence provided ie: 2 positive ANA blood results and nearly all the 11 primary symptoms of SLE. He then wanted me to see his dermatologist who looked at my butterfly rash on my face and said straight away he thought it was rosacea. He did not ask about my other symptoms and was very abrupt. He then said he was going to treat it as rosacea and wanted to prescribe me roaccutane - which I informed him I had already been prescribed. I then reeled off the list of other tablets and topical meds/creams that I had tried for rosacea and he just sighed. 'Well the only other thing is to take a punch biopsy from the rash on your face. You do realise that this is very painful and will leave a scar'. I am afraid I was a little rude and just said 'whatever' which is totally out of character for me. Why is everything a fight - II work full time - and just need help to get through this terrible fatigue, pain and everything else associated with whatever is wrong with me.

Is this standard tratment for most of us who are trying to get an answer.

Jan

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  • it can take quite a long time and its hard because theres no definitive test for lupus doctors go by taking the ANA blood results and the symtoms you are exeriencing you make sure you get the point across of how its making you feel because no one understands what your going though unless thier in your shoes i had to fight to get my point across and was in hospital by the time i got diagnosed.

  • hello gingerjanine,

    so sorry to hear of your battle to get help with lupus. sadly it is has been a battle for me too,i was treated for adult achne for six months when i had a butterfly rash covering my face/chest and neck. i was given steriod creams but were no use. my hubby begged my gp to let me see a dematologist and a biospy was taken to confirm sle (lupus)

    plaquenil has erased the butterfly rash but the joint pain and cronic fatigue ive lived with since 2005, im still fighting for more help. i work part time as thats all my body will allow:(

    too often gp's, specialists and nurses dont see us as humans in distress and can be eagar to dissmiss us. but please stay strong as there will be one good doctor/nurse who will help you.other members on this site have had wonderful doctors so its not all doom and gloom.

    take care x

  • Hi gingerjanine,

    I really feel for you because I know how it feels to be so ill and to feel like your shouting at the top of your voice but no one can hear you, extremely frustrating! I was sent to a psychologist by my gp when I first became ill, for he was sure it was all in my head. I was so ill and confused by this time, I said yes because I just wanted help. anyway, after seeing the psychologist for 30 minutes he assured me there was nothing wrong with my mind and sent me to the immunology dpt to get my blood checked out and it came back positive for lupus. It took a year after I began to feel ill to be diagnosed. I am no expert, but it sounds to me like you have lupus. Ask your gp to send you to a rhumetologist so that you can confirm for sure whether you have an immune disorder or not. If he frobes you off insist and keep insiting don't take no for an answer. there is on thing I have learnt since I have had this illness, is that I have to fight hard for myself because I am the only one who truly knows how I feel. I have also had to fight with my constant feelings of fear of upsetting others, ie doctors, because it does not help me. Its not always easy to do, but necessary.

    All the best I hope you get a result soon.

  • Yep, this is pretty much par for the course Ginger ... as if we don't already have enough of a struggle. If you also tested positive for the rheumatoid factor you should be seeing a Rheumatologist. Good luck with it!

  • Hi there, I must have been very lucky (if you can call being diagnosed with lupus lucky!!) but I went through 6 weeks of severe aches and swelling without bothering going to a doctor, 2 friends had had the same problem and was told it was a virus going about, so I assumed it would go away and put up with it until I had no choice but to go to A and E, I was given painkillers and told to go home, in the same breath the doctor said I would be back, and I was, the next night it was unbearable, I was admitted to hospital and within a day I was diagnosed with lupus, I had all the symptoms, ulcers, severe joint pain, swelling, problems with my vision etc etc maybe I was lucky with my rhuematolgist but he had seen me for about half and hour and even before blood results he had mentioned lupus. my partners mum had also talked about lupus as she had read an article on it, but I dismissed this (as most people do) I was in hospital for a couple of days and put on meds, that was just over 2 years ago. But anyway, sorry for waffling but going by what I have read on here I do seem to have been one of the lucky ones with a quick diagnosis, like a lot of you have said its bad enough having to deal with the symptoms without the not knowing and the run around a lot of people get. Just thought I'd share this

  • hey twilo. :)

    it is not waffling to me,it is useful real person experience.i too was sent away from a and e after years of suffering.i had been pigeonholed as psychiatric before and gp's were useless arrogant and dismissive.i had no idea what was happening to me.i had to write down everyday what i was experiencing as it was so incredible. i wrote down that i was experiencing "re-swell" and "de-swell" having to crash out utterly exhausted

    everyday,scalp was sore and lumpy and even blood vessels in scalp were swollen,brain felt like it was on fire,breathing would not increase..oh and horrible blurry vision, aching eyeballs and no tears for eyes...plus loads of other things.so i could not bare it,i got to A and E at 2 AM in the morning. they called me through left to sit on a chair for about 10 to 15 minutes.i then told someone i was struggling to breathe,brain is hot and achy and pressure in skull. someone came back a few minutes later and gave me a plastic cup with a large tablet in it and i was told to swallow it..FINALLY i thought,at last going to be on the way to this suffering stopping..i thought i had been given a tablet that dyes the blood for a scan to see what is going on inside me !...but when i asked he said it was paracetamol..and to go back in waiting room,and to see my doctor in day !!!...they ADD insult to suffering psychologically and emotionally. it was as if the ambulance found me injured on the road and they got out and gave me a kicking and drove off.of course if you get angry with them,you could be blacklisted and marked as violent/psychiatric..that was the last contact i had with nhs 5-6 years ago ...for my own survival i cannot risk them damaging me anymore.

    i do feel a bit stronger recently as a lot of my symptoms have been in remission (scalp hand joint pains,crashing out exhausted and blurry vision much reduced) so i have to try to contact a gp...but have such a block in my head about them...oh,have your medicines and rhuny helped your symptoms or not ?

  • So many of you have had bad experiences with GP, rheumatologists. I live in a small rural area of the highlands and I must say I have had a great service from the NHS, however I must also say I seem to have lupus a lot milder than most on here, and have no other complications or maybe I am just on the right meds. Stretch, I too have found this site and the personal comments a great help with dealing with lupus. My meds seem to be right, after a couple of years of juggling, I take one 200mg Hydroxychloroquie and 4 200mg of Mcyophenolate daily, and been off prednisolone for a month now. I obviously still get the daily aches and pains and only on Saturday I was hit badly with fatigue, but haven't had a major flare since October. Fingers crossed this continues. My vision was a major problem at first to the point where I couldn't drive. I haven't had problems with my vision for a good while now. My rheumy has been fine, waiting to see him since coming off steroids,he just says he will juggle about with my meds till they get it right. My downsides are the problems with depression and chronic fatigue I always seem to feel. Oh the joys ;-)

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