It has been a struggle since my disastrous appointment with the rheumy as I was depending on my regular GP, the one who suggested that I might have lupus, to discuss the rheumy appointment and what to do next. BUT she just stone-walled me and reported that the rheumy had decided that I didn't have lupus and my symptoms were not auto immune so that was the end of the road. She, GP I think, recommended over the counter pain meds. As my symptoms were 'age' related.
I have outlined details of my rheumy appointment in previous posts, I feel so let down: like I have nowhere to go and plenty of time to get there!
Rather dispirited. Any suggestions?
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Annienjoe
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I know it is frustrating when you were hoping to get a better understanding of what is causing your symptoms. It is common for GPs to send patients to rheumatologists to rule out autoimmune disease but not common for patients to actually have lupus from what I have read. The rheumatologist does tests based on your symptoms and history. If they rule out autoimmune disease at this time, it seems to me the GP can only watch your symptoms and refer again if things change. These diseases evolve over time. Could you tell us what symptoms you have that make you concerned about lupus?
I first visited my GP last summer, my symptoms were muscle and small joint pain and fatigue. The painful muscles included my neck, shoulders and arms as well as pain in my legs; although I was recovering from a badly broken ankle, 3 bones.
My GP was concerned about the damage to my ankle and we discussed osteoporosis. Subsequently dexa scan ok.
GP commented on the rash (malar) on my face.
She ran a lot of blood tests: weakly positive ANA and low vit. d.
I also have Raynauds disease. A long history of oral and maxillofacial problems as well as stomach problems.
Oh and terrible bother with my feet; requiring orthotic insoles.
I feel like I'm ranting on and on; so i'll stop here for now.
Did the GP confirm lupus or just want you evaluated? It does seem like thus far your symptoms and labs would not point to lupus. A weak positive is apparently common. Has a dermatologist seen your rash? The rheumatologist may not think your joint point is inflammatory. That does not mean you are not in pain. Did they mention osteoarthritis? You are not ranting. You are struggling. They may be able to help you with a variety of approaches. I do not hear from what you described that you would hear a different view from a second rheumatologist. But you are entitled help.
GP just wanted me evaluated. I haven't seen a dermatologist.
The rheumy did not do any labs before making a diagnosis: she talked to me about the list of symptoms she had received in the referral letter, with a hint of derision in every sentence and concluded that: the ana was weak (dismissed), the low vit.d was caused by the Scottish weather, the rash was rosacea, the joint pain was arthritis, and the muscle pain/weakness was irrelevant, the chest pain was probably angina and recommended GP refer me to cardiology - no heart problems were found.
To be honest I have had a lot of these issues for many years and I didn't ever join the dots, maybe they don't need joined. My main concern is if there is a problem; what are the consequences of ignoring it?
It actually makes sense. It sounds to me like he was quite detailed. Yes, you have reason to want to be diagnosed — but properly. If he is a trained rheumatologist, he can tell rosacea from a lupus rash. When he can’t, he would refer. One of the things that is stressed is that the ANA should not be done without high suspicion of lupus. It causes too many false positives. You may have picked up on his sense that your GP made a referral without sufficient reason and caused you worry. Your GP will address the pain of your arthritis and other symptoms. You definitely shouldn’t ignore the problems but get proper treatment.
Hi Annienjoe, sorry about being left in the lurch, so many folks here have been in the same position
If the lab says ANA is positive then that's what it is, 'weak' doesn't come into it and there's probably a commentary from the lab scientist (who has the same status as a consultant - thanks PMRPro!) saying so.
If ANA is positive, the lab does cascading tests for specific antibodies (dsDNA is strongly suggestive of SLE) - ask for your results and check the further tests have been done
There's a single UK guideline for SLE*, and Table 5 has the diagnostic criteria. One has to be an immunological test (eg ANA), then at least 3 clinical symptoms, eg malar rash, other rashes, pain in two or more joints, mouth ulcers...
Vitamin D is in Table 6 as a check at initial assessment and annually - new research suggests it's a cause of SLE**....there a definite link between deficiency and SLE....and it should be prescribed if SLE is diagnosed
See your regular GP again and ask for a referral to a knowledgeable rheumatologist. Be well xxx
Thanks eekt, I just feel that I am banging my head against a brick wall at the moment. I think i'll take a time out and pick-up again when I next have a 'flare', not pain free at the moment but manageable. If only there was some respite from the fatigue.
Hi KayHimm , I would like to suggest that as none of us here are medically qualified we cannot really say whether someone's symptoms and blood test results do or do not point to lupus. What we do know is that conditions that present like this can be difficult to diagnose and can take some time unfortunately. Many people in this community will have had very similar experiences of being dismissed or misdiagnosed along the way and we're not here to say who is right or wrong, just to support one another and provide information that may be helpful.
You are correct. What I should have said was that the doctor seemed to be giving his reasoning and felt her symptoms did not point to lupus. Some doctors are not as specific as he was.
Has anyone ever mentioned fibromyalgia to you at all? This is another autoimmune disease. A lot of these autoimmune diseases mimic each other. Fibromyalgia causes a lot of muscle pain aswell as joint pain and other issues. I have lupus aswell as fibromyalgia and there are no blood tests to determine if a person has it or not. The only way is by a clinical assessment where they will check for how many sore points around the body out of 18. With fibromyalgia if you have muscle pain say in one shoulder then it should also be there in the other shoulder and so on. So I wondered if you had muscle pain like this. You’ll be able to find out where on the body these 18 points are by just looking up fibromyalgia on the website. I hope you find out the answer to what’s causing you these problems soon .
Thanks S23S5, no mention of fibromyalgia so far. The muscle pain I experience is on both sides of my body from the muscles in my lower jaw down to the middle of my chest (shoulder girdle) and my arms. My thigh muscles are also affected. Onwards and upwards!!!!
Low vitamin D can be an indicator of many autoimmune disorders - and none as it can be the CAUSE of many of the symptoms patients suffer. Getting your vit D level up to scratch would be a good place to start - then you know it isn't that. It doesn't matter why it is low, the Scottish climate and distance from the equator isn't helpful but hardly earth-shattering in terms of remedying it.
What you describe could fit a range of causes and someone has mentioned fibromyalgia - there is also polymyalgia rheumatica if you are over 50 now (since you mention having had the symptoms for some time). My husband used to do diagnostic testing for Raynauds, please don't anyone get upset when I say that the usual cause for the majority of women he saw in the north of England and Scotland was not dressing warmly enough for the conditions! I had Raynauds, images of my hands were hanging on the wall in a diagnostic department as typical reponses to cold challenges!
Don't despair - start with what you can do. Maybe getting vit D up to a good level will make a difference. Try it as a simple measure.
Thanks PMRpro, I have been taking vitamin D for 9 months and I do believe it is helping. The Raynauds symptoms I experience in my hands are not too bad and can be alleviated with warm clothes. Interestingly when I was exploring Raynauds on the web. I discovered that it could affect other extremities; ears, nose, etc. which explained a long-standing problem I have had for years; a painfully cold nose worst in bed at night!
When I was 48/49 I was 'tested ' for PMR, but it was negative. I am 60 now. And so it goes on!
ME has been established as Autoimmune or immune-related as in Lupus, which is a very similar condition in terms of infections being in the background. When ME doctors found out about this (that it was immune system issue), some ME doctors decided to quit as it became apparent that nutritional therapy they were using was no use on ME after all. They moved on.
ME and Fibro seem to be "co-morbidities"; some GPs think they are the same. EDS is also likely immune-related condition but nobody wants to admit it (that those eminent doctors were wrong all along.) So status quo continues as if nobody wants to be honest. Gullible patients believe what doctors "make up" as they go along. Old people gather and discuss things when they write guidelines. They are a bit like a committee, deciding as to how diseases should be diagnosed, universally. Psychiatrists do the same, too. It's a bit like a Club.
One EDS patient was given IVIG recently, it was in Asia.
In some papers, Fibro was already presumed as Autoimmune/immune system issues as in ME. These are probably all immune related/autoimmune diseases. Rheumatology seems to be busy validating "Fibro" before it "suddenly becomes another AI disease" in response to the research data. They already know it's AI. Fibro Patients are pumped with painkillers and anti-depressant instead of immunotherapy.
Rheumatology Drs seem to spend years and years not doing much for patients, who obviously had a long list of AI symptoms, that are only too obvious to other AI patients. Many patients no longer have any faith in Rheumatology/Rheumatologists and their "out of touch" practice (broadcasted on HU daily) as if "patients" do not need any of their help. Their status quo is so strong as doctors are bound by their own prison of "guidelines" at the expense of patients long-term misery/unable to be living a fuller life. When they stopped helping patients, it becomes a very self-serving entity.
The excuse of "Fibro/not AI" will not be valid soon. So what excuses would they come up with after that? If it's not Lupus, it could well be another AI, be it "overlap", "CTD" or "Lupus spectrum" and a long list will go on. Rheumatologists need to stop being a lab technician. That's the first one. They need to listen to what patients are saying, taking notes, taking symptoms, rather than staring at lab results and not much else.
Regardless of whether someone has medical training or not, it isn't appropriate to provide advice on this site as it is not a replacement for a medical consultation. No member has access to someone else's complete medical history and laboratory results and they are not able to have a consultation.
You're absolutely right that health professionals do not always get diagnoses right. Our members surveys have shown that over 45% of people with lupus were initially misdiagnosed.
It can be very difficult to encourage GPs to attend additional training for conditions like lupus because they are relatively uncommon. I know that Professor Graham Hughes has tried to organise courses that would award training credits, but they had to be cancelled because of very low interest. There is competition from so many different conditions and GPs are much more likely to see things like diabetes, heart conditions and mental health conditions so will focus their additional training on these. The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) is working on ways to improve this. rairda.org/
"Lupus" seems to trigger different opinions depending on clinicians, who "view" "Lupus", differently.
I was given Lupus diagnosis and supporting that diagnosis, 3-4/5 times (total) in the earlier years of investigations, followed by "all the usuals" that you all are familiar with. This did not evoke much faith. But, we'll see.
One thing for certain is that in recent years, as you know, Prof Bruce was doing the overlap studies, this raised far more awareness of multiple/mixture of autoimmune diseases, occurring alongside of each other. One professor said to me that Lupus is not that complex. My response was "oh, really?"
I'm assuming that Lupus UK support Lupus and other autoimmune/CTD patients.
There can be differences of opinion, especially with rheumatologists who do not have a specialist interest in connective tissue diseases and have limited experience with patients presenting with them. There are NICE-accredited UK guidelines for the diagnosis and management of lupus in adults which should ideally be followed, but these are still 'relatively' new and need to continue being shared.
LUPUS UK certainly supports people affected by various forms of lupus as well as lupus-like conditions such as undifferentiated and mixed connective tissue disease. We also work closely with other charities representing people with other autoimmune diseases on shared objectives.
I have definitively diagnosed Sjögren’s plus Hashimoto’s rather than Lupus. I have felt terribly well supported here and have become a member of Lupus UK and have never really felt like an imposter in this lovely community.
Whereas when I was misdiagnosed for 5 years with RA I still felt like a terrible imposter on the NRAS community. And I barely ever use communities such as Thyroid UK because, despite having long-standing Hashimoto’s - I find the willingness of some to diagnose and recommend treatments to others rather terrifying.
I think the overlap syndrome thing applies to a majority of us but is rarely properly acknowledged by most general rheumatologists - who often prefer to focus on the distinctions rather than the blurred edges.
But having said that I also think there’s a need to have both kinds of specialists because RA and PsA are much more common then the others and are easier to diagnose and respond very well to early and aggressive treatments. And PsA is more musculoskeletal than autoimmune but needs dedicated rheumatologists to try and bring it under control with strong drugs and physiotherapy. These are the main diseases general rheumatologists have to focus on.
As I had my name put in the title of this post (I liked but failed to respond until now- sorry!) I wanted to say that I think there is a good reason to wait until a diagnosis of a rheumatic disease or overlapping diseases can be correctly made. This isn’t only for psychological or treatment reasons.
It’s also because Fibro and ME are not responsive to the same treatments as Lupus etc and aren’t systemic ie they don’t erode joints or nerves. Also ME doesn’t respond at all well to targeted exercises whereas PsA, AS and OA can respond incredibly well to targeted exercises.
But rheumatologists tend, like many doctors, to focus on diagnosing conditions that often respond well to pharmacticals - mostly disease modifying drugs including immunesupression but also anti TNFs and Biologics which could be contraindicated for Lupus or Sjögren’s - especially if you have a neurological presentation of these.
No doctor wants to diagnose Fibromyalgia only to find that their patient’s joints erode and deform rapidly with missed RA. Or that their kidneys or lungs start to fail with Scleroderma or Lupus. But equally no doctor wants to put their patients on potentially harmful drugs through misdiagnosis. So it’s a tough path for them to walk too which is probably why so few medical students choose to specialise in rheumatology - let alone CTDs. It’s hard!
This is why diseases like EDS, Sjögren’s and Lupus often go undiagnosed and are often less of a priority or are even ignored - once it’s been established that organs aren’t being affected yet.
EDS particularly struggles because it’s lumped in with ME, Fibro and CPRS which can all be circumstantial - whereas EDS is actually a hereditary CTD and of itself can cause very serious problems affecting the organs, severe prolapses, PoTS etc. It can also cause the kind of stuff I’m presently worrying about such as cerebral spinal fluid leaks - which can actually be fatal if ignored but can be treated effectively if correctly diagnosed in time.
Also a primary Fibro or ME patient mostly won’t be at greater risk during surgery than others in the general population. Whereas someone with EDS might well. They can often have thinner, weaker dura or skin or crumbly, weak teeth or suffer dislocations or have stretchy guts prone to kinking for example.
So these distinctions do matter and when misdiagnosed, can be dangerous.
For what it’s worth I don’t have a diagnosis of EDS and will immediately revert to imposter syndrome if I apply any of these potential issues to myself here.
But my late mum’s stretchy intestines were misdiagnosed as IBS until they formed a huge knot around her bowel which very nearly killed her and definitely contributed to her untimely and sudden death. So the various overlaps do need to be evaluated properly by an expert in CTDs rather than by general rheumatologists.
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