Importance of getting a proper diagnosis: Mum left bedbound in pain due to poor diagnosis

The headline is the wrong way round but the story is a sobering lesson in life. Headline should read:

Mum left bedbound in pain after doctors mistook infection for lifelong disease. “

Lyme disease bacteria are not the only ones that can cause RA symptoms. I will post a follow up on the Differential Diagnosis for RA, the process for avoiding such mistakes, which, sadly, is rarely followed, in particular, failing to look for an infection, which is curable.


  • Arthuritis
    Arthuritis Member Posts: 412

    RA Differential Diagnosis 

    A differential diagnosis is a process used in medicine to identify the possible diseases or conditions that could explain a patient's symptoms. It involves considering various potential causes and systematically narrowing them down based on the patient's history, physical examination, and diagnostic tests.

    When a patient presents with symptoms, the healthcare provider begins by gathering information about the patient's medical history, including any pre-existing conditions, previous illnesses, or medications. The provider then conducts a physical examination to gather additional clues about the patient's condition.

    Based on this initial information, the healthcare provider generates a list of possible diagnoses, known as the differential diagnosis. The list includes conditions that could potentially explain the patient's symptoms. The provider considers a wide range of possibilities, including common conditions as well as rarer or more serious diseases.

    To further refine the list, additional tests and investigations may be ordered. These can include blood tests, imaging studies (such as X-rays, CT scans, or MRIs), biopsies, or other specialized tests depending on the suspected conditions. The results of these tests help to narrow down the possible diagnoses and eliminate certain conditions from consideration.

    As the healthcare provider gathers more information from the patient's history, physical examination, and test results, the differential diagnosis becomes more focused. Eventually, the provider is able to determine the most likely diagnosis or a shortlist of the most probable conditions.

    The process of differential diagnosis is essential for medical practitioners to make informed treatment decisions. It helps them consider all possible causes of a patient's symptoms and prevent misdiagnosis or overlooking less common conditions. However, it is important to note that differential diagnoses are not always straightforward, and sometimes further investigation or consultation with specialists may be necessary to reach a definitive diagnosis.

    When a patient presents with classic symptoms of rheumatoid arthritis (RA), such as bilateral joint pain in the elbows and hands, and tests positive for anti-cyclic citrullinated peptide antibodies (ACCPA) and rheumatoid factor (RF), the following would be among the possible differential diagnoses to consider:

    1. Rheumatoid arthritis: This is the most likely diagnosis given the symptoms and positive ACCPA and RF. Additional tests may be done to evaluate the severity and progression of the disease, such as C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) to assess inflammation levels, and imaging studies like X-rays, ultrasounds, or magnetic resonance imaging (MRI) to examine joint damage.
    2. Systemic lupus erythematosus (SLE): SLE shares some clinical features with RA, including joint pain and positive RF. However, it typically presents with a broader range of symptoms, such as skin rash, photosensitivity, kidney involvement, and specific antibodies like anti-double-stranded DNA (anti-dsDNA) and anti-Smith (anti-Sm). Further tests, such as an ANA (antinuclear antibody) test, complement levels, and specific antibody tests, can help differentiate between RA and SLE.
    3. Psoriatic arthritis: Psoriatic arthritis is a form of inflammatory arthritis associated with psoriasis. It can also present with symmetric joint involvement and positive RF. A thorough examination for skin and nail changes indicative of psoriasis is crucial. X-rays and MRI scans can reveal characteristic findings like enthesitis (inflammation where tendons and ligaments attach to bone) and joint erosions.
    4. *Reactive arthritis: * Reactive arthritis typically occurs following an infection, often involving the gastrointestinal or genitourinary tract. It can cause joint pain, swelling, and inflammation, but it is usually asymmetrical. In addition to a detailed medical history, tests for specific infections, such as Chlamydia trachomatis or gastrointestinal pathogens, may be conducted to support the diagnosis.
    5. Osteoarthritis: Although osteoarthritis is primarily a degenerative joint disease, it can sometimes cause bilateral joint pain. However, it typically lacks the systemic features seen in RA. Imaging studies, such as X-rays or MRI, may reveal joint space narrowing, osteophyte formation, and other signs of osteoarthritis.

    It is important to note that the presence of positive ACCPA and RF is highly suggestive of rheumatoid arthritis, but these tests alone are not sufficient to establish a definitive diagnosis. A comprehensive evaluation by a rheumatologist, considering the patient's symptoms, physical examination findings, and additional diagnostic tests, is necessary to confirm the diagnosis and differentiate it from other possible conditions.

  • stickywicket
    stickywicket Member Posts: 27,600

    This can happen but only, I think, very rarely. In all my years on here I can recall about three 'possibles' though it's always worth a check especially for hikers or dog walkers.

    Personally, though, I think The Mirror has hyped this up a bit..

    1. A friend got Lyme disease about 20 years ago. She was diagnosed and successfully treated without mention of inflammatory arthritis.

    2. We have perfectly good tests here. Why on earth go to Mexico for one?

    3. "Kirstie's first noticed fatigue and pain in her joints after a visit to a rheumatologist " After? So why did she go?

    4.("As doctors believed the condition to be auto-immune, they attempted to suppress her immune system - but Kirstie now believes this worsened her condition")  As Lyme disease can itself trigger autoimmunity it would seem to me that Kirstie was probably wrong here 

    5. We all know that long term use of steroids can cause osteoporosis and that they're tough to get off. (But sometimes necessary to get on in the first place.

    Here's what NHS says about Lyme disease 

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Arthuritis
    Arthuritis Member Posts: 412

    @stickywicket I wouldn’t get too hung up on the mirror’s embellishment of the story, or the detail of borrelia. The same could be said of a number of bacterial infections including dental bacteria & STDs which if not treated, can give you an autoimmune disease with all the same markers & symptoms as RA, which only subside on removal of the triggering bacteria.

    The main message is to be your own advocate, the NHS is fallible, Consultants are human and fallible, and while they do not openly acknowledge this, their decisions are influenced by arrogance, pride and time & money pressures, so they will cut corners on a differential, because statistically they’d be right, 80% of the time, and discard data that does fit the diagnosis they had in mind, particularly if it might have an adverse impact on their budget or standing. But as a patient you don’t want to be in the 20% where they got it wrong, especially if it’s a cheap check and treatment with a profound benefit.

    Some of the top consultants have often spoken out about this and the expression I heard was from a senior consultant from a top London hospital at an NHS conference was “Where there’s retirement, there’s hope”, so fed up were they of those that had the power & budget but wielded it to serve themselves first…

    Cases of RA triggered by bacterial inflammation are sufficiently common that the UCL Gastro & RA depts now have active research in this area, but it’s not the only source of triggering Reactive RA. (Porphyromonas gingivalis, burgdorferii and STD bugs can also trigger RA if untreated).

    A good read would be on Dr Barry Marshall’s efforts to break medical dogma held by medic’s despite evidence to the contrary. Dogma backed by pharma that benefitted from sales of expensive ongoing PPIs & antacids for an “incurable” and excruciating condition. Dr Marshall won a Nobel prize for breaking that dogma, and for a few years after 1981 medics started thinking more like him, questioning long held “we have always done it this way” but 15 years later it was back to the old ways. However it was a huge battle for Dr Marshall, to fight for his patients against the entire pharma industry & his colleagues who would not speak to him for rocking the boat. It’s a truly fascinating and eye opening piece of recent medical history (recent for those born before 1981!).

    Even the history origins of how the practice of teaching modern medicine is an eye opener, where conditions are diagnosed and the “defect” treated with a pharma product.

    The earlier practice of spending time looking for a cause and cure, was phased out as they were not financially favourable to the sponsors of expensive med schools.

    The founder of this modern model from 1910 was none other than US oil tycoon JD Rockefeller, son of a “travelling medicine man” and creator of the demand and boom in oil by marketing the internal combustion engine auto, pushing out the early horseless carriages which were all electric as for “women only” as they did not have the power, noise and need for cranking… He saw the lucratie vitamin and pharma industry and wanted a piece of the action as the Americans say, so what better way than to sponsor medical schools to produce thousands of salespeople trained to treat with a pharma product and call them doctors, dressed in a model that promoted evidence based medicine, which was a good idea in principle, but it allowed no room for prevention or cure. Even today, things like nutrition take up only a few hours of a 6 year medical degree. It’s only with the likes of Prof Tim Spector that we are now seeing a reversal in this with greater study of nutrition, the big role of the gut biome. In short, it’s a fallible system, and today it’s necessary to be your own advocate. The RA industry today is worth around $47bn per annum, comprising of biologics and replacement joints. It is unlikely that it will be allowed to go the way of peptic ulcers & PPIs/antacids. Or as my first rheumy consultant at a prominent London hosp told me… “There isn’t a cure because there’s no incentive to find or allow one”. The best we have is that a portion of sufferers may have Reactive RA, for which there are better treatment methods. Lifelong Immune suppression for everyone else. Since having been treated with antibiotics for an infection that removed my RA trigger, and off any suppression since March like @Hairobsessed123 , I have met others in a similar situation ignored as anomalous mysteries, but we manage it by carefully managing our diet, thus avoiding flares or needing extra vaccines or isolation. Had Fleming or Jenner been alive today, they would have immediately investigated like Marshall did. Conversely if today’s medical leaders were in charge back then, there’d be no vaccines or antibiotics, instead we’d be paying for painkillers and amputations.

    That said, after some pushing i finally got RA to reluctantly refer me to gastroenterology…

    From the BMJ on gut & RA..

    “, in 1922, Rea Smith, a surgeon based in Los Angeles, noted alleviation of swelling, pain and joint immobility in multiple patients with chronic arthritis on the conclusion of various bowel operations. “