Hi im new to forum

[corfu]

Hi everyone i am new to the forum i have many health issues i have COPD, OSTEROARTHRITIS in hands feet and knees. In 2012 my health took another bashing i was constantly fatigued, i had insomina and had pain all over, i was hardly able to walk i have put on nearly 5 stone in weight i have never weighed over 9 stone my whole life i had my thyroid levels checked and the only one which was abnormal was my TSH which has been abnormal for a few years the level is o.21, my GP is great she referred me to RHEUMATOLGTIST twice and they kept saying oh its the arthritis thats cause all of my symptoms. After my GP referred me to pain management consultant, and i was diagnosed then with Fibromyagia cfs/me. I am unble to take many medications due to me having bad reactions to them, so i can only take co codamol 30/500mg and codine 30mg in between i also take nortriplyine at night.

Then a few months later i was also diagnosed with hip bursitis in both hips and also i have a shoulder impingment which was diagnosed by orthopedic surgeon who said it would be best to operate on shoulder but with all the other health issues he thought it would be best to wait. I had to stop work as i could no longer cope with it. What with the pain the memory problems and now almost wheelchair bound. Then out of the blue in March i started to get skin lesions on my legs and also a raised dry rash on my cheeks and over my nose doctor gave steroid cream but that didnt help, so she took some pictures of the lesions and sent them to dermotolgists they recommened having a ANA AND ENA blood test as it looked like Lupus, well the blood tests came back negative so the doc prescribed different steroid cream that the dermotoligist had recommended, i used these for another two weeks but they done nothing for the lesions and i also had about 15 more lesions appear. So the doc spoke to dermotolgist and he said to do a punch biopsy which i had a few days ago so wont get results now till 6th July . I was wondering could it still be LUPUS when my blood results are normal, im sorry for such a long first post but i wanted to put as much info in as i could

[LupusKaren]

Welcome to Lupus UK Corfu.

You have been through a tumultuous time indeed, I am so sorry that you have had so much stress and heartache.

No consolation I am sure, but it can take years to get a definitive Lupus diagnosis, my journey was approx 12 years, though Lupus has likely been the diagnosis since I was a teenager (now 53).

But you have a good ground start with a supportive GP, trust me this can make all the difference. Not everyone will have a positive ANA, I had not, until this year, diagnosed officially in 2009, but I do have other auto-immune markers such APS (Hughes Syndrome), high CRP and ESR continually.

Whereabouts in the world are you based UK? We could recommend you a Rhuematologist that we know takes a look at the whole of the patient, history and not rely just on blood work for example. Just the county will suffice, happy to PM you my Consultant's details, as in the UK using the choose and book system you can see who you like.

Best wishes

[corfu in reply to LupusKaren]

Hi thanks for taking the time to read my post, i live in mid devon i am unable to travel far due to the other conditions i have. I will get my biopsy result next monday so i can then talk things through with my doctor. I thought you had to have positive ana and ena tests to confirm lupus but from what i have been told now it can be diagnosed with biopsy so i wait and see what the diagnosis is. As many other people i am use to waiting now

many thanks

[Fennella02]

Hi Corfu

I echo LupusKaren in everything that she says. Your GP sounds very supportive and proactive - it makes all the difference. Having had indifferent GP's for years, my new GP is wonderful and needles away at my Consultants when times are tough.

A small percentage of cases can be diagnosed with Lupus without any of the characteristic antibodies - I am one of these. I was diagnosed with 'textbook presentation' back in 2001 yet have never developed more than a weakly positive ANA which was only transient and is now negative again despite active disease. There are also a number or overlap conditions which can cause any combination of symptoms without specific antibodies - all these connective tissue disorders are difficult to diagnose and can evolve over time as mine has done.

I live just over the Somerset border and was diagnosed at my local hospital. Don't give up pushing for diagnosis and I hope you can soon look forward to feeling better. Clare x