My wife and son both suffer from a condition that looks exactly like sjogrens but still waiting formal diagnosis. In the course of seeing a dozen or so consultants in respiratory, heart, neurology and general they have all concluded there is nothing wrong and its all in their heads. Yet my son barely get out of bed and string words together and my wife struggles to breath, has extreme fatigue and her mental ability is impaired + loads of other stuff.
I thought it was just us that has problems with NHS doctors until I read to my horror the many postings of patients suffering the same if not worse. This is a bit comforting (to know if we are mad we are good company) but really troubling that it is so systemmatic and has such a profound impact on people's lives.
I am a great supporter of the NHS and I am sure that Doctors are doing their best but something isnt working.
How do we make this better for all now and those to follow ?
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jimbo1605
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Just to clarify - last time you posted, your wife had been see both by NHS rheumatology and the London Lupus Centre and was on hydroxychloroquine. I think you mentioned steroids also? Have things changed for the worse for her and/or your son since then?
Or are you wondering in a more general sense?
I post on here a lot, so you may know that I have had many referrals and investigations and am still mystifying the specialists with my current symptoms. At first, I was misdiagnosed and my AI condition overlooked, but in the circumstances that was understandable. As a recent post by @PMRpro said, "Lupus is known as 'the great imitator' because the disease can have so many different clinical presentations resembling other common conditions".
For me, the most effective strategy in general has been to be well-informed about possible differential diagnoses and able to suggest tests (for instance, last week, I suggested a serum magnesium test to my GP. He was happy to comply, but that would not have happened if i had not suggested it).
Dr Kaul was excellent and the hydroxycholoquine has worked a bit with my son and until recently really well with my wife. My wife had a uti (one of many) a few weeks ago and was prescribed augmentin which in the space of two days removed any progress the hydro had given her. She is breathless with tightness across her right lung, extreme fatigue really bad brain fog, rain drops feeling on her body, regular migraines, aches and pain and twitchy legs, constant uti's.
We are still with the NHS rheumatologist who is very thorough and good but I feel as though she is finding her way on this one and is still to make a diagnosis but states it is an autoimmune condition.
I really feel sorry for you to be in this crazy world of immune disorders. I had terrible UTI's until I was advised to purchase D-Mannose capsules or powder. It is a derivative of Cranberry and does not interfere in any way with Hydroxychloroquine. Look for a self help group near you - join the BSSA charity for Sjogren's very very helpful 0121 478 1133 - good luck
Wife - suggested that Sjogrens tests should be completed which is now underway. Son - less specific but he prescribed Hydroxy for both and this has helped them both in the two months since starting. Son was slow but is coming on nicely now and wife was rapid improvement but has had a setback when she was prescribed antibiotics. jim
I'm sorry to hear about your wife & son my heart goes out to them.
I'm sort of in the same position & have not had a definite diagnosis it's been a 14 year battle. We all know when there is something wrong with our bodies, it's just such a shame that you have to literally convince some GP's that your actually Sick. As mine have spent the last 14years trying to convince me that I'm "fine"
I have found my self in limbo & very desperate to get answers, with no support or empathy from my Surgery or other specialists my father & partner have managed to scrimp & save for me to go down the private root.
It's overwhelming! & so kind of them both. My family are trying there Hardest to get me the help I deserve, but it's like getting blood out of a stone. All I want is to get better it's not In my head, & if they could spend a week with me then the doctors would understand just how bad things really are.
I can relate so much to your post and I don't normally reply as I feel it isn't my place, but don't loose faith I'm at the point of giving up, I'm
Having a ODG under GA tomorrow & it's my only hope to find out what's going on.
I know some lovely people on here have a great team of specialists & GP's who care, but there are others who don't like myself, & I'm still trying to find the answers to what is making me so unwell.
I have medical evidence & results to prove I have a auto immune disease but I don't have a doctor or specialist who wants to take the time for a complex case that I am.
Thank you for your post and your experiences do help others deal and progress with their illness. Good luck with the investigations and do let us know how you get on. jim
Unfortunately this is a big problem and there are many factors that contribute towards it.
One factor is that awareness and understanding of lupus within the medical profession is still very poor. It is therefore important that we continue to campaign for more awareness of lupus and provide information to medical professionals. LUPUS UK attends a number of exhibitions and conferences for doctors of different specialties and also has books for doctors and nurses to help them learn more about the condition.
Another factor is more systemic within the NHS and is to do with increased specialisation and decreased appointment times. The 'one appointment, one problem' system makes the diagnosis of complicated, systemic conditions like lupus much more difficult because symptoms are viewed in isolation, rather than considering the person as a whole when making decisions about diagnosis, referrals or treatment options. Many GPs are under pressure with the amount of patients they have to see and cannot (or do not) refer to the patient's history. This puts more responsibility with patients to take ownership of their path to diagnosis by booking double appointments allowing time to discuss more complex health problems.
In addition to these factors, lupus and other autoimmune conditions are very complicated and present differently between individuals. This makes them more difficult to recognise and differentiate between the conditions, especially if there are overlaps. It often helps in these cases to see a specialist who will have more experience with the conditions and may recognise cases that are less 'typical' in their presentation.
The only thing I would add is there is an issue over little pockets of knowledge on different things in different places at different times. I am sure for everyone seeking a diagnosis there is someone somewhere who has the same symptoms, has had a diagnosis and is being treated. This is the great power of this forum in sharing experiences to help us all.
Is it possible for Lupus UK to produce a table database / table that maps symptoms / test results to possible conditions. I recognise that you shouldnt give medical advice but at least it gives a starting point for patients to ask their doctors ?
Lupus Uk do great work and I dont think we would have progressed as quickly with the information provided by Lupus Uk and on this forum - so thank you. jim
Unfortunately we don't have the capacity or expertise to undertake a project like the one that you suggest ourselves, however, we are actively involved in a number of multi-centre research studies and registers and we also contribute funding towards their work. There is ongoing work to improve the diagnostic criteria and disease activity scales and researchers are constantly looking for new biomarkers that can help make diagnosis quicker, easier and more reliable.
One of the big projects taking place at the moment is called MASTERPLANs and it is trying to identify how certain lupus patients will respond to certain treatments, in an attempt to eliminate the current trial-and-error approach to medications that is often needed. This very large, multi-million pound, collaborative study should produce a lot of data about the genetics and biomarkers of people with lupus which will translate to many other research projects.
We will continue to campaign to make both the public and medical profession more aware of lupus and the warning signs so that it can be considered and tested for earlier.
I am glad to hear that LUPUS UK and this forum have been helpful for you.
So sorry for your family suffering. When one member of our family is suffering, we all suffer too.
It's just a thought, but have either been tested for Lymes disease? I understand this disease throws up many symptoms that are often thought to be 'in the head', when in reality, lymes disease, is real, and often undetected, let alone even considered.
Sadly, many GP, and some consultants, no longer search for the causes. They are too quick to diagnose, and prescribe antidepressants.
Yes, I'm with you, I do oftentimes, think conspiracy theory plays a big part.... either that, or what is the big secret?????
Good luck, keep searching for answers, Your family are fortunate having you in their corner.
Lymes is a great suggestion and the family lived out in Hungary for 3 years when I was posted there with my work so it was foremost in our minds. My son had 3 tests because the NHS one is so unreliable all negative and my wife also had 2 tests all negative as well.
But good thought thank you and to others looking for a diagnosis try and rule out lymes, german measles and chicken pox. thanks jim
Hello. Sorry to read about your wife and son. It's a difficult time for you all. From my own very bumpy road to diagnosis, I would say it's definitely a complete lack of understanding and knowledge of lupus. My local Rheumy - whom I nicknamed my Reluctant Rheumy - never seemed to have the courage to take action with any of my lupus stuff and that was with a diagnosis of SCLE. She wanted to rely totally on blood test results but mine didn't help - only ever had two positive ANA blood tests. She completely failed to appreciate the effect it had on myself and my poor family, every single day. No empathy whatsoever. I got so frustrated by her I ended up at London Bridge for a private appt in April this year. I had been diagnosed as having SCLE for 3 years and 1/2 years and after spending an hour with Dr K, he told me I'd had SLE all along. I wish I'd gone to see him sooner. I would have saved myself lots of heartache and pain. He wrote me a new treatment plan and added mepacrine into my mix. Locally I was on hydroxy and MMF. If the MMF didn't work then it was Azathioprine. Those were my only two options with immune suppressants. Dr K talked about a much more bespoke treatment plan. He says if the hydroxy / MMF / mepacrine doesn't work - then he'll reduce MMF and add a methotrexate. That's just the start. So I guess I am trying to say, I think the average Rheumy doesn't have the knowledge to diagnose and treat Lupus in the same way a Lupus expert would be able to. I would like to think it's not a conspiracy! I think some rheumies are lazy and cannot be bothered to broaden their knowledge of lupus or are arrogant and think they know it all already. So here I am, nearly 4 years since my original diagnosis (although probably had it 9 years, since birth of my third child in Jan 2008) and I finally feel that a) I have a Rheumy I can trust in Dr K and b) my treatment plan seems to be working. Fingers crossed this continues. I am not saying that my life is normal for a 43 year old and I am symptom free. I just think compared to the flares I've been through, I'm doing pretty well. I know the whole long process of trial and error with drugs, is frustrating, but your wife and son will improve. Best wishes. Wendy PS Hydroxychloroquine worked initially for me. Within 3 weeks some of my skin issues were improving but overall it was 12 months before I truly felt I could see it working. With hindsight I should have asked to overlap starting hydroxy with a course of steroids to lift me out of a flare that had lasted most of 2013. But I didn't have the knowledge then.
Hi its Joan , Jimbo's wife . I'm going through a flair-up now . probably caused by the antibiotics I've been on for yet another Kidney infection. I'm going to the surgery to ask for a course of steroids because I am so short of breath. Thank you so much for sharing with us . Its so important to know we're not the only ones fighting this uphill battle. Thank heavens we have Jim on our side because I cant seem to think straight any more.
Hello Joan. Lovely to meet you. I'm glad you and your husband have found our site. This has been a life line for me and I hope you will find lots of information and support here too. It's great to share our lupus journeys as it helps others. There is a search facility on this site, so for example you can search a symptom or a drug, all related posts will pop up. It's useful. Also the Lupus UK website has some great information leaflets and info re support groups etc. I could go on forever with tips. But I'll leave it there for now. You're having a rough time. Go to your doctors and ask for steroids. Be patient with yourself and get lots of rest. It's going to take time and you need to accept your diagnosis. Let us know how you get on and please do not hesitate to ask any questions. Best wishes.
As stated earlier, specialists tend to be a bit lob sided with their specialty knowledge and GPs aren't always able to assimilate the differing opinions.
I've had SLE lupus for about 34 years now. I agree with Wendy39. For me Rheumatologists have generally been a little sexist - a little invalidating and a bit too ignorant of the subtleties of Lupus.
I did encounter a really good one in my early twenties but after that - most following Rheumatologists seemed to be always looking for external signs of illness - joints - redness - as apposed to thinking about whats going on inside the body.
With those kidney infections - perhaps try for a Renal (Kidney) specialist with an interest in Lupus, but in the meantime make sure your GP has checked your kidney function ! For me - Nephrologists knowledge of Lupus has been a profound relief to me. (Although I am posting from Australia - so perhaps medical knowledge bases are different there ?) -
Perhaps also look for generalist consultant with several degrees or as most people at this site recommends - a broadly qualified Lupus Specialist.
Its a terrible fact, but you just have to use all your strength and keep Doctor hopping until you find one that has the skill and integrity to help you. They are out there.
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Scunnered with others lack of understanding?
Anyone got any experiences of neurologists not understanding lupus please to share with CQC and hospital management (anonymously)
Totally tee'd off with phone consultations and how A&E are (not) working.
Finally got to the bottom of my stroke like episodes.
Just goes to show doctors really should listen to their patients more.
