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?
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.
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 ☺️
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