Hi went for my first appointment today what a waste. Asked a few questions then told it could be fibromyalgia not lupus need to do more tests!! Blood the same as gp has done and wait for scan appointment to come in post.
Has anyone else had the same treatment??
Hi Dawn
I suffer from hughes lupus rheumatoid arthritis and sjorgrens - everyone I seen regarding these illnesses seemed to not have a clue about them, I knew more about hughes than the haematologist and the rheumatologist only seemed to want to throw pain killers at me no information on my illness at all - after going through the hughes syndrome forum on this site, I found a specialist in auto immune illnesses and so far I haven't looked back there's loads been found out that wasn't even checked for at the previous hospital. Hopefully there will be an improvement in my condition if not at least I have medical professionals that understand what I'm going through
Hope this helps
Bev x
Hi Bev, yes I agree they do not seem to understand or do not want too!! I just feel it was a bad experience and not sure what to expect now! Lying in bed so much pain swollen feet and legs!
I am not sure if I have a fever I feel so hot! Thanks for your advice xx
It might pay you to try and find a specialist in your area at least that way you know that everything that can be done is being done and you're getting the medical expertise and support that you need and deserve, I just find the normal rheumatologists and haematologists tend to underplay these illnesses yet they impact sufferers lives massively x
I had the same...was not right for several years and eventually diagnosed with fibro in 2007. Then after more periods of ill health including pleurisy I was diagnosed Lupus in 2011. It seems that the indicators for Lupus can be hard to pinpoint and sometimes takes quite a lot of long drawn out elimination and observation to make firm diagnosis. Horrid but seems to be fairly standard, just hang in there and keep on letting them know how you are affected.
Thank you! Yes I guess it does take time to get correct diagnosis! 😊
Yes I been in same boat as you seen 3 remo and only one new about wot I got iv got APS so now I give the my doctor the list of specialist cos he was not getting no where not iv got my appointment on 9th July n Sheffield some times you just have to push cos some of the doctor don't know about the illness we all have so wot the point in seeing them when they don't know about wot we are going through hope you get sorted good luck x
When I first was tested for lupus my blood work came back as positive then negative then positive so I was tested 3 times before they finally said it was lupus
Same to me... These dr just don't know my first rheumy said more test every three months and now also testing for Sjogrens they dx me with fibro and my Vit d level was a 3!!!!! So I'm in Vit D, and praying I dint flare again. The 2nd rheumy flat out said fibro and that's it!!! Despite the oral ulcers on the roof of my mouth, swelling joints, positive DS DNA , and butterfly rash I've had pleurisy etc... But of course nothing present at the time of my rheumy appt. But I was so bad my go put me on 40 mg of pred that decreased over 5 days... Voila MAGIC!!! I was better until I went to beach... So even my GP is very frustrated with these Rheumy diagnosis... So I'll keep fighting!!! Don't get discouraged !!!
Thank you! We all get treated the same!!
Hospital appointment - rheumatologist 
Telephone appointment with Rheumatologist
First appointment for the rheumatologist
Frustrated after Rheumatologist appointment!
First rheumatology appointment tomorrow
