I need help and advise to

Hi everyone I been diagnosed with lupus since last year after years of testing they finally did this test I also have rheumatoid arthritis anti ro + and sergens Carnt spell that one , I have been feeling really ill the last couple of months, I have callapsed , I have severe chest pain , dizziness and Carnt breath on time , I can't walk far before being out of breath, my rheumatologist specialist is concerned to but is not ousting anything soon I have got to ring his secretary all the time , I have two very young children and my partner and my parents got to work with each other to make sure I am not on own , but I have had enough now and want to go private to see a lupus specialist as it kills me that I can not do things with my little girls they growing up fast and don't want them to have the memory of me being bard all the time , have anyone got a name and number of a really good specialist I can have please xxxx

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  • There are a few good lupus specialists around the country, I don't know what part of the country you live in, so my advice is to contact Paul on this web site lupus uk by phone or private message and he will be able to find you one near you.

    I've just booked an appointment to go private in London at the lupus clinic London Bridge as they let you pay for a consultation with a top professor but I can have any test done through my GP which will cost me nothing. Win win for me.

  • Hi, Sorry that you are feeling this way. Your post just sounds like exactly how I have been for this past 5 years since my diagnosis. I had severe chest pain & short of breath, heart palpatations, couldnt walk any distance & feeling like i was slowly dieing. My rheuumy is v good but nothing massive showed up on bloods etc. I was taking hydroxy which wasnt helping my symptoms. Finally i just cried to consultant & told them i cant go on like this, & something was very wrong. Like you i have 2 young kids & life was so difficult for me. Eventually after thorough investigation they found a clot on my lung, to be honest i was so relieved. Im now on warfarin & feel that awful tightness & pain is gone after years, i cant believe it, noone took me seriously! I have had pericarditis (fluid around lung) in past too, have all these problems been ruled out by your rheummy? Ive also started azathioprine & steroids which have worked so far brillant i feel great & hopefully it continues. What meds are you on, obviously they are not working. I know how hard it is to get on bigger drugs my rheummy held off til now, not sure why, when i really couldnt take anymore! I was in hospital over xmas. Sometimes bloods dont reflect exactly how your feeling in my case my bloods werent too bad but my quality of life was horrendous. I hope you find a good specialist & get the meds you need so badly. Keep pushing for the treatment you so badly need.

  • Hi Tasha1980,

    I'm sorry to hear that you are unsatisfied with your current rheumatologist. It is a shame that you feel you need to be seen privately because there are many excellent lupus specialists available on the NHS. If you would like to try being referred to another NHS specialist, I could let you know who may be closest to where you live?

    Private consultations can become very expensive, especially if they require additional tests to be done. The main place in the UK that see's lupus patients privately is the London Lupus Centre - londonlupuscentre.co.uk/

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