An update to share with you ... and some questions to ask about St Thomas' Hospital

[bestbuddy]

Hi all. I saw my rheumatologist for my 6 monthly check this week. I am a little upset with how things have been going lately with my health. I have coeliac disease, underactive thyroid and lichen sclerosis as well as many of the symptoms of lupus / sjogren's, in particular, excruciating joint pains which are mostly in my fingers, wrists knees and lower back. Also they migrate and flit from joint to joint. I also have muscle pain, fatigue, dry and gritty eyes and a raging thirst at night.

I take 200mcg Plaquenil and manage in between with paracetamol and ibuprofen. He wont prescribe more as I have no firm diagnosis.

The trouble is, I have never shown positive in any of my bloods that I am aware of apart from a raised ferritin (there is haemochromatosis in the family / and other auto immune problems). The consultant says indicative of inflammatory response but EVRERYTHING is negative! I could cry with frustration as I know how ill I am when in a 'flare'. He has written to my GP suggesting sjogren's / UCTD / soft tissue rheumatism - but negative bloods.

I have been seeing him for 2 years (but had joint probs since childhood) and his diagnosis has changed 3 times. I appreciate these things are hard to nail, but I need some answers. My husband suggests I ask for a referral as all you good people on here have been helped by going to a Lupus specialist centre.

1. Can anyone tell me, when asking for a referral to St Thomas' London, does the GP write ahead and then the letter arrives by post?

2. Do the doctors help diagnose by symptoms and history rather than relying merely on blood tests?

3. If the letter arrives by post, can you ring and go on a day suitable? I work 3 days a week and would obviously travel the 230 miles on my days off.

4. Does your local rheumatologist need to be informed? Do they stop you seeing them if being treated at St. Thomas'?

Sorry about the long post, and thanks in advance.

[Paul_Howard Partner LUPUS UK]

Hi bestbuddy,

Whereabouts in the country are you? You'd be travelling a long way to St Thomas'. There may be a lupus clinic nearer to where you live and I can let you know.

[bestbuddy]

Hi, I live in Wirral. I realise that it is a very long way but so many people seemed to have been helped by going there. I am really looking for a doctor who will look at all my symptoms and not merely rely on bloods alone to diagnose - when all my life since the age of 18 (I am now 52) the bloods have been negative.

I asked my rheumatologist whether he would be willing to make a diagnosis based on history and symptoms. He replied, 'some doctors do, but I haven't ever done so' which isn't entirely helpful. He said he wouldn't abandon me but I would rather know what is wrong with me ...it feels rather like an attempt to throw a dart at bulls eye blind folded.

Any help will be gratefully accepted.

[Paul_Howard Partner LUPUS UK in reply to bestbuddy]

I think you would be much better off asking for a referral to Prof Bruce's lupus clinic at the Manchester Royal Infirmary. It is much closer to you and I imagine their waiting list will be much smaller than St Thomas' too. Prof Bruce is a lupus specialist and would provide fantastic care.

[Hidden]

Hi best buddy, Paul's advice should be considered for many reasons. Waiting list for st Thomas's, is very long, and you will need to keep a local rheumy, as in my experience, I only saw them annually once I was 'sorted out and stable'. I don't go anymore as they kept cancelling and re-booking for the next year. My lupus is too active to only see a rheumy biannually !!!! They are very good, that's why they are so overloaded, but the local rheumy I had at that time, was quite put out by st Thomas's intervention. Especially as he had messed me about like you. But of course I had to see him in the interim appts, and he would moan at me if he hadn't any recent letters on my last consultation there. A lupus rheumatologist should consider physical exam, and will probably run more detailed bloods on you. I was diagnosed in 2005, and wasn't offered that option.( there might not have been then). I lived in Essex, so not as far as you, but lucky for me I now live in Colchester, and my st Thomas's rheumy now works at my local hospital. Whatever you decide to do, don't give up in getting relief.............ps my GP referred me at my request.

[san61]

Hi bestbuddy. I asked yesterday about a list of rheumatologists that specialise in lupus,as my mum has it and her rheumy is rubbish. I found out that Prof Ian Bruce is one at manchester Royal Infirmary, Thats much nearer for you. Co-incidently,he is my rheumy too as i have systemic sclerosis,but I didnt realise he specialised in Lupus! Good luck

/edit...I had a reply in my thread about a Dr Gladstone Chelliah at Wrightington hospital in wigan. Thats probs nearer still

[bestbuddy]

Thank you for the replies so far... I am really nervous about going elsewhere and my main criteria is not so much the distance, but whether they would give time and empathy to listen to my history and whether they would be wiling to diagnose outside of the 'box'.

Do other centres use St Thomas' alternative criteria too?

Any further advice would be welcome x

[san61]

In my experience with prof Bruce,when i first saw him as my bloods had certain antibodies etc,he was great. After asking lots of questions,getting me to do various movements,and scrutinizing my hands...he decided i didnt have lupus,but systemic sclerosis. So it seems to me he doesnt just go off bloods. He is very thorough

[Hidden]

I can't say if it will be the same as I have not seen a lupus speciallist in another clinic. Ask Paul for the info, and then you can post again to see if anyone has seen your chosen dr. Like san61 has said, prof Bruce is good. Not the first time I have heard that name on here. Your current rheumy is causing this nervousness, and that stress will only aggravate your symptoms. Look on the bright side, if you find someone nearer, you will never have to see your current Dr again. Everyone is entitled to a second opinion.

Ps... To all cleverdicks out there, I know Colchester is still in Essex, but I was other end of Essex before.....lol...

[bam1993 in reply to Hidden]

Oh, 6161!! You give such good advice and you do so make me laugh-a 'true Essex girl' if ever there was one!!.....But I do know what you mean as Essex is a very big county!!

[bam1993]

Bestbuddy....just to say, I do sympathise with you, and totally understand why you so want to go to St. Thomas' Hosp, but it is such a long way from you, it would only add to your stress levels getting there. Also my experience of St Thomas' was not great-I had been diagnosed with Fibro by my GP (2008) - and in 2010 another Dr at my practice (at my insistence) refered me to their Fibro clinic....but was discharged after 18mths with a letter saying 'this lady seems to be getting worse' (still have the letter!!) and saying again that it was Fibro-finally almost 2 years later I got my diagnosis of Lupus at my local hosp.(Feb 2013)...and I did get worse-nearly lost my job-and am still only clinging onto it with my fingertips!!) I know I am not allowed to name and shame on here-but I did make sure that that Dr got an email from me telling him that I have finally been diagnosed with Lupus!!-(via his private clinic!!) I do have to add that in his defense, he did get my 'carpal tunnel' ops sorted on both my hands-and that has made an awful lot of difference-but I am sure he thought that and Fibro was all that was wrong with me - I KNEW it was more than that!! If I was you I would stay with a specialist Dr nearer home...but of course that is just my opinion - Good Luck and keep pushing you will get your answers in the end x

[bestbuddy]

Thank you all for your replies so far ... feel free to keep them coming!

I am not saying my current rheumatologist is bad ... I just want to be sure that any new doctor will not be quite so dismissive and feel his/ her hands are tied by seniors because my bloods are negative. THEY HAVE ALWAYS BEEN NEGATIVE!

Even my local optician is referring me to see an eye specialist (through my GP) as he can see plainly my tear film quickly breaks up causing blurred vision, and that is only one of my many symptoms!

Thanks for this great site

BB

[bestbuddy]

I have been really brave and e.mailed Prf Bruce!! I have just given a brief potted history and asked whether or not he might be able to help.

Thank you all ...your suggestions are really helpful indeed.

[Elle-26]

Hi Bestbuddy,

My blood tests are normal ... barr Anemia. It was a hard battle with the GP's to get them to listen too. They first thought I was depressed because my hair was falling out (ignored the migraines, fatigue and rash) Even the first Dermatologist dismissed me with Alopecia ... What happened next was horrific for me ... last year from June to August I had dizzy spells, nausea, felt really ill and broke out in lesions, lost all my hair, eyebrows and eyelashes ... Made an appointment with another Derma who did a biopsy ... DLE & Photosensitivity ... Then had really bad eyes, throat, muscle pain, joint pain etc ... The Derma made an appointment to see a Rheuma and even though my bloods were normal they found through tests I had Sicca, Muscle, nerve & spinal problems, he also found I have Arthritis and IBS and symptoms of Fibromyalgia.

... I was referred to a Neurologist .... he did tests and found I have got problems, my feet are freezing, buzzing feeling with pins and needles sometimes my limbs go dead ... I now await the electrode tests. They are all puzzled as to why my bloods are normal ... My Rheuma wanted me to go to London ... its because they are more equipped & have more expertise on Lupus ... I live in Cornwall and its hell of a way to go especially with my fatigue and tiredness ... not only that but Ive got children ... I fought through last year to get help, I've rarely been to see a GP before last year and only just got over pre cancerous cells ... then this hit me brick after brick .. but I feel everyone in the NHS I see is helping me with getting to one diagnosis .. I believe they are also keen as I don't think they get many "out of the box" patients lol ... we have to be awkward -x-

[san61]

What a good idea to email Prof Bruce! Hope you get a good reply,let us know