Recent GP visit with a mouth full of ulcers brought long standing health issues to a head. I have a long history of health issues since contracting mononucleosis in 1987. Fatigue, dizziness, headaches, migraines, Endometriosis, sleep disorder - hypnogogic hallucinations, sun allergy that began as a rash several hours after sun exposure on uncovered areas of skin, that over the years has progressed to feeling physically ill to be out in the sun; faintness, headaches, fatigue, and takes several days to recover from experiencing flu type symptoms. I permanently wear sunglasses when outside as daylight and bright lights hurt my eyes and causes headaches.I have an at least fifteen year history of low platelet and white cell counts that slightly improved when I began taking thyroid hormones and full range multi vitamins and iron etc, but still sits at the very bottom number in range ( white cells) platelets bottom fifth, Doctor thought it was something auto immune and ran tests. I just wish I'd gone a month earlier whilst I was really poorly with the sun issues and flu type symptoms. The worst symptoms come in waves lasting a few days to weeks, especially in the summer. I also have toes that go blue, aching arms and legs that come and go, a history of multiple uti's that I now have antibiotics at home for ( around 20 proven in a four year period) the list goes on. ANA came back 1:160 homogenous and speckled. Adsna came back at 9.8 . I've read anything above ten with positive ANA should cause suspicion? Anyway, I was referred to rheumatology and later found the waiting list to be a minimum of 20 weeks. Decided to go for a private consultation to try get some answers sooner due to my symptoms and obvious worries. Would have to revert back to NHS after this as cannot afford private treatments.
The rheumatologist had my records and started by saying he didn't think it was lupus. I said I know the result wasn't high, but wondered if this was because my sun symptoms had now abated? I had print outs of all my white cell and platelets results over the years, but he said the most recent were just in range - literally one number from the bottom of the range. He asked if I had joint swelling, I don't. I have aching arms and legs but no swelling. He said this on its own rules out lupus? I've read extensively over the previous weeks re lupus from pub med documents and academic studies, and nowhere does it state that no swelling rules out the diagnosis. I asked about the myriad of symptoms since mononucleosis and the ensuing thyroid disease that I had to go private to get diagnosed and tested ( NHS wouldn't test antibodies or T3 because TSH was still in range) Explained since COVID there was now all this ramping up of symptoms and much worse sun allergy etc and he said these were all individual issues and not linked. Asked about purple toes , had photos, this started in the first lockdown, and he said "chillblanes ' who gets chillblanes indoors in late spring? I'm not saying I can guarantee this is lupus, but there's definitely something systemic happening here. I just want some help with it all. Getting so many headaches and the fatigue has now progressed to ridiculous levels. He did offer me an antidepressant and suggested fibromyalgia. I don't doubt I have muscle pains, it just doesn't explain all of the ither issues. I said I'm not depressed, just wanting help with these health issues and would this medication stop the terrible sun related symptoms or blue toes or multiple oral ulcers or fatigue, he said no but it might lessen some of the headaches. I left rather upset , with the thought that you can't rule out lupus on the basis a patient doesn't have swollen joints, not understanding how he could simply sweep all the possibly relevant symptoms and signs and medical history to one side on that basis. Arghhh
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Femme1
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I think it shows the risks of spending money on a private audience with a non-lupus specialist or a not carefully selected rheumy who is curious and interested in the patient in front of them. I'm NOT saying it isn't lupus but I suspect UCTD or MCTD might possibly be more appropriate, not that I'm a specialist.
Anyway - he is not correct:
"During the course of their disease, approximately 95% of lupus patients will have joint symptoms − either arthritis or arthralgias. Arthritis in lupus is due to inflammation of the lining of the joint (called synovitis) that leads to swelling, tenderness, and stiffness. Arthralgia refers to joint pain without swelling."
So you COULD say that joint swelling is part of the "normal range" of symptoms. Normal range is defined as something that is found in 95% of patients. But that still leaves 5% who don't conform. Doesn't mean they aren't sick.
Hi PMRproI do have aching/ throbbing limbs that radiate from knee joint to ankle and elbow to wrist, but it's not all the time, maybe 3/4 times a year, often when I'm in a bad spell if symptoms or after sun exposure and feeling like I had the flu.
We have heavy thyroid disease in the family and I have a cousin with lupus too. I know that doesn't necessarily mean this is lupus, just that there's heavy auto immune diseases.
I think for me, it was the instant ruling out before I even got to discuss the symptoms, signs and heavy history, felt like he had an agenda not to diagnose or help. I suppose the NHS are bogged down and perhaps only the worse cases get help, i.e. organ damage though I don't know if I have this, but guessing not, I think my head would be my worst symptom alongside the sun responses. Genuinely believed I'd get help or a steer in the right direction.
That's what I mean - unfortunately, pretty well all private docs are also NHS docs and if they are rubbish at one, they are unlikely to be any better at the other! Any doctor who makes comments immediately is showing their true colours, not interested except in the pay at the end - unfortunately again, it cost you financially to identify an $$$$. At least on the NHS it is free!
You're right there PMRpro, I found out that the private Rheumatologist is the one that runs/ works with my local hospital team. Schoolgirl error lol. I did think the appointment bought me more time to discuss the entire long term symptoms as opposed to a rushed standard NHS appointment. I fully understand the NHS crisis, it's not their fault, but this was terrible. Thank you for your opinions and knowledge on this, t's much appreciated.
The department here that failed me has a lead consultant who works privately.
I blame him really for not having the right patient-centred values instilled in his team.
Encouraging use of 2019 criteria intended for research to define case load.
One of his team told me I had not got systemic autoimmune disease like Lupus or Sjogrens as I walked in the room. Judgement could have only been based on bloods.
It is sad when it is impossible to get help locally and being forced to travel to get care.
I'm in my mid sixties now and needing to travel to avoid my local hospital trust and to get to an area with better care than here really concerns me. I have read posts of people who are older or less mobile giving up as they can't travel.
I actually believe the Centres of Excellence could be seconding staff to improve standards in other hospitals.
With a condition affecting our ability to travel, really believe treatment needs to be spread out so it can be accessed by all patients not just concentrated to make the job easier.
It is great that those near these centres get great care and I don't want this to be lost, but another priority could be to disseminate understanding and best practice.
There are other great centres too like London Lupus Centre. My consultant being brilliant. Shame they can't be cloned and put in charge of all departments like the one here where I live.
Would turn things around really quickly for so many..
Oh if only StriatedCaracara! I'm pleased you have someone knowledgeable and helpful after being failed to begin with. It's all so depressing ( I'm not depressed, it's just rubbish having to be your own advocate and research specialist in terms of gaining help and a correct diagnosis based on symptoms history and blood as opposed to joint inflammation. I can only guess the majority of rheumatologists have specialisms in rheumatoid arthritis?
Hi Femme1. One thing I do like about my rheumatologist is he says”if I lined 12 up against the wall, every one person would be different. My ANA was very similar and DSdna high but I was told by a leading rheumatologist very sternly within minutes I didn’t have lupus because I had no major joint involvement and no major organ involvement. Quote. I wanted a second opinion. Every sophisticated test she did showed lupus. Terse email before flying out of town: you don’t. When I went to my local rheumatologist again, he laughed and said I’m treating you so you don’t get major organ involvement!!!! Years roll on and things have progressed. Not saying you have lupus; but obviously you have something, and that doc didn’t care to investigate or use his intuition (if he has any). Good luck. MM
Hi MrsMarigold. Sorry to hear you had these issues before getting help, though I'm pleased you gave it now, it's reassuring! What a fab local rheumatologist in terms of treating you proactively to avoid organ damage as opposed to waiting until you have this to diagnose. Thanks for you reply and info ☺️
I Googled Autoimmunity and Covid and found research paper but that was done elsewhere. (Locally research is too distant from real issues of you and me).
Despite papers like this, local consultant here said no link had been found between escalation of autoimmune symptoms and having had covid infection.
I seem to meeting a fair few people who would dispute this. My few symptoms snowballed to be many, and of a greater magnitude.
Given that research papers are mentioning it you would think specialists might take more if an interest when it seems to present, rather than shutting the door on us.
Agree completely with your comment re AI conditions worsening in connection to Covid, in my case the combined Covid and flue jab APPEARS to have escalated and increased all my symptoms associated with Stills disease and/or precipitation a new AI condition.
Crikey that's terrible. At least I was ill before worsening of the symptoms and not as a response to something that's supposed to help in the long run.
I have had a similar health story starting with mononucleosis, a protracted recovery and similar symptoms to you - never being able to place what was wrong until I was hospitalised with Covid. Only recently have I had progress with a diagnosis which turns out to be complex Antiphospholipid Syndrome (triple positive) and they are querying a UCTD. Have you had your Antiphospholipid antibodies (APL), Lupus Anticoagulant (LA), and anti-B2GP1 checked?
APS’s symptoms have significant overlap with Lupus including joint pain which I am being treated with using 400mg Hydroxychloriquine and have had unbelievable relief, it does takes around 6 months to take full effect. Hydroxychloriquine is used independently for Lupus, UCTD, and APS.
During the process of seeking a diagnosis I had one virtual appointment with Dr Maria Bickerstaff at the London Lupus Center (£300 at the time) and although it was ruled out that I personally had Lupus she was by far the most attentive and engaged specialist I have seen on my journey and would recommend wholeheartedly. I have also read many threads that recommend other specialists within the same hospital LLC and the receptionist there can help match you with the right expertise.
There will be someone who is willing to trial you on treatment so please keep trying and good luck on your search 💪
Thank you AndherandOther antibodies were tested, but only the dsDna came back ( alongside the ANA positive) the dsDNA only showed low levels though, 9.8. I've read that a result of 10 although not high, raises questions if the ANA is positive. I think my first question is if I've tested positive to any level of asDNA how do we know I wasn't coming out of a flare? My most recent worst symptoms were during mid July to end of first week in August after sun exposure ( again) I always get more and worsening symptoms including skin response in summer. My blood test was almost five weeks later. I just wish I'd gone in then before all the mouth ulcers, but I have always assumed that these were a natural but nasty progression of my sun allergy , and thyroid disease symptoms etc.I Even paid for private thyroid bloods again thinking I was maybe having a flare, but they all came back in range, even reverse T3 so I can't lay the blame there.
I will have to save up again, read and read more and book a virtual appointment perhaps. I'm thinking of also writing to GP, don't even know who mine actually is , so that it's on re ord and asking them to look back if my medical record re possible flags for lupus and similair diseases and explain why I think this warrants more investigation. There are so many sign posts, but obviously I'm not going to say this in an accusatory manner, more am ask for help.
In my experience my GP was instrumental in supporting my referrals and eventual diagnosis. My GP practice is not good and I had to have appointments with 4 of the practitioners till I found the one who I felt would support the testing and referrals I needed. If I had not found them I would have considered moving GP’s as they are the gatekeepers of treatment or at least in Scotland they are.
I then only booked in with my preferred GP, they had the ability to order some speculative labs to rule out certain conditions while I waited for a referral and once tests came back indicating potential issues they were able to escalate my referrals to urgent which puts you on a better wait list.
While I waited for my appointment letter I would also phone the NHS appointment line for my region and consistently check if they had any cancellations and if I could be put on the wait list. This got me a rheumatology appointment 6 months earlier than I would have normally, although it wasn’t with the exact specialist I had wanted it still got me on the books and I could run the additinal tests that only a Rheum can run. The GP may also be able to run labs for you during your next flare to check against previous results and appointment times may be faster with them. In the past the an GP has accepted when I wanted to rerun testing on abnormal results when I didn’t have access to an appointment in the specialist.
Regarding ruling out lupus. I had positive anti-dsdna but negative ANA, negative ENA screen, normal C4 but slightly low C3, positive Rheumatoid Factor, and also normal kidney urine and blood markers. The rheumatologist wasn’t clear why they felt I didn’t have lupus but they prescribed me hydroxychloriquine for the UCTD and heamatology supporting its use for APS so I didn’t peruse that further. I will continue to test my ANA yearly to see if that changes as I’m suspicious but most Rheumatologists I think don’t support seronegative Lupus.
My advice regarding private appointments is that they all cost roughly similar amounts per appointment irrespective of the quality of reputation or location. Booking and gaining input from at Lupus center of excellence or with a renowned specialist who is actively involved in research is the best you can do and going virtual saves on travel/ time/ accommodation. They will forward on their specialist opinion and proposed treatment plan along with any advised further testing and your local Rheumatologists will have a hard time disregarding the information without being exposed to negligence.
I know this does sound like a mountain, and doing it while being ill is particularly gruelling but it does feel like you are close!
You remind me so much of myself with your history and when I first read your post I immediately thought get tested for APS. So I’m glad someone else has mentioned that too.
I had the same issues as you initially but they were not thinking Lupus but MS. I already had Hashimotos. Then when the craze for Fibro took off in the late 90’s and early 2000’s they just labelled me with that and CFS but I didn’t believe that. I had a VTE in 2006 but no one thought to check why and I was told just one of those things! Then in 2011 I had a stroke and finally they had to check. I was diagnosed at the London Lupus Centre with both APS and Sjogrens. I’m on both Hydroxy and heparin as I can’t use warfarin but the Hydroxy has helped a lot. I also have Chondritis and get flares so use steroids and always feel better when on them. I was told once you are Lupus like but never had positive antibodies.
You can have seronegative APS which was proved by one of the Prof ‘s who had twins as patients. Both had the same symptoms but one was positive and the other negative! Therefore you need a good Dr who will treat your symptoms not the clinical criteria!!
Hi Star 13, seems like you've had a hellish time of it, this is all quite frightening isn't it. I'm pleased to hear you're getting the correct help now. Yes, several people have mentioned APS, I'd never heard of this until now. Will hit the articles again to fully understand this. As I've said above, I have today sent a letter to the GP re someone looking at my record in a quieter moment though I know GP' s are under so much pressure right now. I felt a letter might make it more formal and more concise in terms of at least having to take a look now, but also because I think a five minute face to face does not give ample opportunity to discuss symptoms spanning decades. Will watch this space. Thank you again for your reply and advice .
Thank you for this reply and all of the information, it reads like you've had to fight a lot of the way re weeding out GP's, accelerating long waiting periods, and pushing for more bloods. You current GP sounds so supportive I'm almost jealous! I will be saving up for another appointment, but probably with the London Centre of excellence. Also whipped off my letter to the surgery re all my concerns with dates re issues and symptoms and blood tests etc. fingers crossed!
if you had elevated levels of DsDNA that is fairly definitive for Lupus.
You could possibly have something like undifferentiated connective tissue disease:
Undifferentiated connective tissue disease (UCTD) (also known as latent lupus or incomplete lupus) is a disease in which the connective tissues are targeted by the immune system. It is a serological and clinical manifestation of an autoimmune disease. When there is proof of an autoimmune disease, it will be diagnosed as UCTD if the disease does not correspond to any criterion of specific autoimmune disease (such as systemic lupus erythematosus (SLE), scleroderma, mixed connective tissue disease, Sjögren syndrome, systemic sclerosis, polymyositis, dermatomyositis, or rheumatoid arthritis). This is also the case of major rheumatic diseases whose early phase was defined by LeRoy et al. in 1980 as undifferentiated connective tissue disease.
The term is sometimes used interchangeably with mixed connective tissue disease (MCTD), as it is an overlap syndrome. However, some researchers believe that MCTD is a clinically distinct entity and is strongly associated with the presence of titer high in antibodies Ribonucleoproteins (RNP).
It is estimated that up to 25% of people with systemic autoimmune disease could be considered to have UCTD.
There are many people who have features of connective tissue disease, such as blood test results and external characteristics, but do not fulfill the diagnostic criteria established for any one disease. These people are considered to have undifferentiated connective tissue disease (UCTD).
I have Lupus, Reynaud’s Syndrome, Hashimoto’s Thyroid Disease, Sjogren’s Syndrome, inflammatory Arthritis (overlap syndrome with Rheumatoid Arthritis.
I take pmhydroxycholorquin, methotrexate and aspirin to treat. If The methotrexate does treat the arthritis and the pain that I experience. It does increase sun sensitivity.
There is no medicine that I know of to treat the sun sensitivity except avoidance, temperature changes both cold and warmth aggravate Reynaud’s and as far as I am aware none of the medicine’s I take help that symptom. The aspirin I take is to prevent blood clots due to the elevate anticardiolipins/antiphospholipids which is a feature of Lupus @ 81mg/day.
Both hydroxychloroquine (risks blindness) and methotrexate are potentially dangerous drugs where the risk/benefit analysis only works out if you have a positive diagnosis for Lupus. Even with a positive diagnosis of lupus and relatively easy access to a specialty Lupus clinic for a lot of the symptoms that you mention there is not very effective treatment.
Lifestyle treatments such as excellent diet, sleep regulation, daily exercise, weight control, stress control are the main treatments that rheumatic patients have available to them.
I would not want to take either hydroxychloroquine or methotrexate, azathiorene, cell per without clear evidence of Lupus because there are significant risks and frankly only some benefit.
Please look at NHS and various American websites for some more information.
Although people think that the diagnoses of lupus, rheumatoid arthritis (RA), scleroderma, and other autoimmune conditions are plainly defined, often these diseases are not as clearly separated as one might think. Here are the three most common reasons for uncertainty in diagnosing lupus:
You have symptoms of multiple autoimmune conditions.
You have too few symptoms.
You have abnormal blood test results, but no symptoms.
Thank you Mimi1900, this is so helpful. There's so much information here. I've previously read so much, about auto immune diseases along this spectrum but mainly re Lupus. I realise now that I'm barely scratching the surface. My initial reading has centred around plausible cause, factors that exacerbate symptoms, other conditions with similar symptoms, and diagnosis criteria. I really need to widen my net.
My dsDNA levels weren't elevated, they were only 9.8, and I think the criteria for likely diagnosed or serious testing re lupus is 25. I read that a score if 10 should raise questions though. I also have read and discussed issues re auto antibodies in thyroid support groups where there is still the argument we shouldn't really have noticeable levels of auto antibodies, with the opinion that these only occur after an auto immune attack and lower levels signify less disease activitiy at present as opposed to a negative result. I'm torn on this.
So sorry this happened. I had an awful time with Drs also and was ignored for years until my condition became life threatening and now is terminal I'm told as it spread to other organs. Not trying to alarm you at all. Just saying it's so frustrating. If you have the funds please seek alternative opinions privately. You can't know what it is but the right tests can help a little with working it out. It could be it's mixed connective tissue disease which isn't even a comforting diagnosis as it basically means they don't know what's going on but it's systemic. A rheum once told me most rheums mean well but the truth is they just can't know for sure what's wrong or how to treat it. Not very assuring but at least honest. Certainly one of the keys is to reduce the inflammation and calm the system plus work out what's causing the inflammation. Is it food/ stress/ environment/ genetics etc etc. I'm wishing you much strength and success in finding the right support. 🌸
I'm so sorry to learn about your experience, it beggars belief, although this seems to be the norm nowadays the more I read. It's so wrong, and dangerous. I will most definitely not give up trying to get this sorted one way or another. Sending you best wishes and strength!
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