St Thomas Lupus Trust

Why do we have to PUSH and PUSH to get a diagnosis from MDs? I just don't understand and am close to giving up

I have heard the sympathy and advice over and over " keep going", "hang in there" I don't think I can much longer.

I have Lupus, Menieres. Diabetes, and AI Hepatitis. I have researched all my conditions. I am on Azathioprine, Betahistine, Quincloric, anti histamine, and serious anti depressants.

I was diagnosed with AI Hepatitis in 2001 which was identified as the cause of the Lupus. Other AI conditions followed as above. I have 4 weekly blood tests for taking Azathioprine which show that my LFTs are within normal measurements and everything else seems stable.

I have been suffering pains in my wrists which shoot from my wrist up through my thumb. I thought it was to do with joints and stuff so I "saved it up" for my Rheumatology appointment two weeks ago. I described the feel and sound of a piece of elastic snapping. The young doctor prodded and manipulated but did not replicate the movement to cause the pain. It centred around specific grasping type movements. She asked if I had painkillers and intimated wear and tear. On thursday my left thumb began to feel numb and remains so. There must be some AI complaint to explain this, rather than being patronised and ignored. The pain, numbness etc remain.

I have had a seriously dry mouth since the 1990s. It makes the morning break with a thick, dry tongue and dryness down into my throat. I am careful with my dental hygeine and drink up to 10 litres of water a day. My dry mouth has resulted in the calcium erosion of my teeth for which the only plan is extraction or expensive correction needing nearly £1,000 worth of work.

I have a dry cough for nearly a year. The only treatment I have received is an x ray which was clear. The cough could be sparked by dry food, apples (!) and the dry mouth. The cough progressed to always end in a baulking movement which tipped "water" and clear mucus back up into my mouth. I have waited all that time to be referred plus a month trying to diagnose GORD, which was not proved.

Today I saw a consultant in ENT. His first question was " how old are you? "67.

He used a metal camera instrument an examined my nose and throat.

His diagnosis? Dry mouth. I have nose bleeds, sores in my nose, painful mouth ulcers and a sore tongue. He urged me to drink drink .Despite my interjecting that I drink continually, one has no choice in the matter, I was ignored. His comment to the nurse at the end of the 10 minute session, 4 months, we'll see if she has taken in enough fluids.

I am aware of other AI complaints which can be more than suggested by my symptoms. I do not cry wolf, nor do I continually go to my GPs unnecessarily. I am not unintelligent and know my body.

Why do I have to "Push and push' to have my symptoms given true weight and have treatment given?

Am I passed my sell by date? Do,I have diseases that gov't want ignored?

Twice in one 14 day period I am ignored.

I don't think I have any "push" left in me


9 Replies

I've just had a look through all your symptoms and have just e-mailed our nurseonline with my thoughts. Once we've both looked at this I'll come back to you. The unfortunate part is that you're not alone with the continual struggle to get medical professionals to provide a diagnosis - it's infuriating that they take so long and even then don't come up with any answers. Hopefully we might have a suggestion or two for you shortly..........


Thank you



I suspect strongly that the dry mouth/tongue etc is Sjogrens, have they diagnosed that with you? It's a common condition in lupus patients. The mouth ulcers, sores in your nose etc are also very common with lupus.

Our nurse sent the following suggestions:

Dry mouth is a common symptom of lupus, and particularly Sjogren's Syndrome.

This is a very distressing condition for the patient and can be difficult to treat.

This condition can make eating and speaking difficult. Saliva cleanses the

mouth and contains important substances which combat infection. Sugar

containing drinks should be avoided. If your mouth is dry, sugar will linger

in your mouth for longer, producing a prolonged acid attack on your teeth. A

dry mouth is therefore more prone to dental decay, gum disease and candidal

infection. Coughing may result from a chronic dry mouth and throat.

Certain drugs can also cause a dry mouth.

Smoking, alcohol, carbonated and citrus drinks, hot spicy and over salted

foods, mouth washes containing alcohol, and toothpastes containing the

foaming agent lauryl sulphate should be avoided.

Sipping still water between meals, using gravy, sauces, yoghurt, mayonnaise,

chewing small bites of food, and eating slowly, using a detergent-free

toothpaste, and chewing sugar-free gum help to alleviate the problem of a

dry mouth.

The foaming agent, lauryl sulphate, is in most toothpastes. Lauryl sulphate

can irritate the lining of your mouth causing ulceration, and is more of an

irritant in dry mouths.

Biotene toothpaste is highly recommended for dry mouth sufferers. They also

produce a mouth wash, lubricating gel, and chewing gum.The website address


Salivese and Glandosane are artificial saliva sprays, which contain

carmellose sodium.

Oral hygiene is essential in order to try and protect the teeth as much as

possible, and regular visits to the dentist is mandatory.

Joint pains are a common feature of lupus. If the numbness in your thumb persists

your GP may be willing to arrange for you to have a nerve conduction test of your hands. This would indicate whether the nerves in your hand are affected by the carpal tunnel syndrome. Applying anti inflammatory gel to the joints affected may give you some form of relief.

Hope that all helps a bit.


May I thank you most sincerely for giving my post your kind attention and for giving me more answers and suggestions than I have heard in the 14 years I have had Lupus. On discharge from hospital after diagnosis I fretted and made myself ill not having been given anything other than tablets. When I was re-admitted because of this and I was asked what the matter was, I said I felt confused and didn't know what to do. The response said slowly as to an idiot was, you should go home and get better.

14 yrs later my medical support is not any better, as outlined in my post. Is Lupus, such a complex disease, worth no support? I really dont understand. I do believe in the North -South divide and our treatment does seem to be better in London and the south. Are there any practitioners of whom you approve up here? If so, can I ask for a referral? I must tell you that at a recent GP apt I thought I would see if I could ask if I could see another Consultant by asking an unfamiliar GP the question. The response was, well you see a Rheumy at the hospital, they will be the specialist expert in Lupus. Is it any wonder I despair?

This is by way of trying to explain why so many of us post about our disappointment and disallusion at the medical service we don't receive.

Again my thanks for your, and the nurse's detailed response and for all the help given me. Lastly, no I have not been diagnosed with Sjorens from anyone despite my telling any M D I see of my on going symptoms, but I will go to my Drs re the nerve damage.

Having researched AI subjects and benefited greatly from the posts of my fellow Lupus sufferers on Lupus UK I muddle along as best as I can.

All the suggestions and advice I have received I will investigate. The thought of non stinging toothpaste is great.

With gratitude STLT and nurse,




As I have lupus myself I feel (figuratively and literally) your pain! Lupus is always considered the 'poor relation' in healthcare for some reason. The only dedicated lupus unit (at St Thomas), which had its own building, was closed down by the NHS and is now part of Guys Hospital Rheumatology.

Obviously it's difficult to diagnose any condition without seeing a patient but I'd strongly suggest you pursue the possibility that you have Sjogrens. If it was me I'd collect more information on the condition online and if your symptoms match (which I'd say they seem to) I'd take print the information and take it to your GP (that's what I always do).

Our website always has plenty of information, this is a list of the Rheumatologists we know to be lupus experts, you just need to ask your GP to refer you to whichever you want to see:

Also if you need to contact our nurseonline you will find her very helpful and it's a free service the St Thomas Lupus Trust provides:

Good luck! :)


Oh no, Angie, I hadn't realised the Specialist Lupus Clinic had shut down. That is disastrous! It was always comforting to know there was always one place in the NHS where we Lupies were understood. My experience in Wales is that the Rheumatologist Dept. hear but don't really listen. To be fair they're overworked and they haven't got the time to cope with the variations of conditions that are part of 'normal' life for us Lupies. That's where a specialist clinic is invaluable. what exactly happened to The Team when they were absorbed by Guys?


The clinic moved to be part of Rheumatology dept at Guys (as in info above), the lupus team moved there too. It's not the same at all though. Having a dedicated building with specialists clinics for lupus and related conditions was much better :(

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Many thanks to you footy⚽️ and to STLT for this frank & constructive discussion!👍👏☺️

I'm 61 and have what we now know is infant onset lupus which went unrecognised until 4 years ago

after 4 years of initiation into this complex world of diagnosis & treatment for immunsystem dysfunction, I feel I've learned quite a lot...enough to realise that getting effective diagnosis & treatment is never straightforward, and seldom an easy or smooth process

E.g. I'm at the point where my impression is that many of us already know quite a lot about sicca & sjogrens...& are doing our best to manage the various sjogrens affected systems of our bods....but the NHS multi system clinics involved in those bits of our bods aren't necessarily stepping up (ie ENT & ophthalmology clinics etc need to acknowledge both our lupus & our chronic sicca issues etc & get down to formulating credible treatment plans).

In my experience & to my way of thinking....this is about more than being treated by rheumatologists experienced in lupus, it's about accessing other multisystem clinics (ENT, ophthalmology, orthopaedics, gastroenterology, urology, gyn etc etc) that have at least 1 clinician on their staffs who understands the effects of autoimmune conditions on patients like us & is willing to focus more effectively on our cases. After all, our numbers aren't insignificant...and of course many of us are dealing with this difficulty of finding autoimmune-experienced Drs at a range of multisytem clinics ...especially those of us who've been living with an autoimmune condition for a considerable number of years and, as a result, are living with significantly progressed multi system debilitation.

I could go on & just so glad to have found this forum & this discussion☺️👌👋

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