Hundreds wrongly told they are MS sufferers

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 23, 2006.

  1. tansy

    tansy New Member

    The Times
    August 22, 2006

    Hundreds wrongly told they are MS sufferers


    For more than two decades, John Simper was resigned to a slow and painful death from multiple sclerosis. Unable to work or drive, plagued by recurrent headaches, bouts of confusion, short-term memory loss and weakness in his limbs, he feared that he would end up paralysed and in a wheelchair.

    Today he feels mentally and physically stronger than he has in years, after being told that MS was almost certainly misdiagnosed. Instead he has an illness that can be treated with an aspirin a day.

    He is one of hundreds who may have had MS, the progressive disease of the nervous system, misdiagnosed. At least 5 per cent of those told that they have MS are believed instead to have Hughes syndrome, which results in the blood becoming thick and sticky and liable to clot dangerously.

    Patients in whom MS was diagnosed — the disease affects about 85,000 people in Britain — have experienced seemingly miraculous recoveries on learning the true cause of their illness, in some cases after decades of ignorance.

    Paralysed patients have regained the ability to walk and others have overcome debilitation, headaches, confusion and short-term memory loss with treatments involving blood-thinning drugs such as aspirin and warfarin. Mr Simper, 60, from Ipswich, a former motorcycle racer and mechanic, went to his GP after reading about Hughes syndrome in a magazine. Recognising his symptoms in the article, he asked his GP for extra tests. They showed that he had Hughes. He is campaigning to increase awareness of the condition. “I’ve got used to the idea of MS over the last 26 years. I’ve always been someone who wants what I want when I want it and I have not let my condition get in the way of that,” he said. “But people are needlessly suffering because they don’t know the truth about their illnesses, and the Government has to take notice of that.”

    An estimated 150,000 people in Britain suffer from the syndrome, first reported by Graham Hughes in the British Medical Journal in 1983. It has since been confirmed as the cause of one in five recurrent miscarriages, one in five strokes in younger people and one in five deep vein thromboses. Yet Dr Hughes, now a professor at the London Lupus Centre, says that few GPs are alert to the condition and lives are still being ruined because simple tests are not offered as a matter of routine.

    “It is still totally under-recognised. People have been told they have MS and treated as such yet received no benefit, and the true cause has been under our nose the whole time,” he said.

    Hazel Edwards, 48, a mother of two from Wrexham, North Wales, was paralysed from the neck down and received no benefit from chemotherapy and intravenous steroids after MS was diagnosed in 2001. She can now walk again, after a diagnosis from Dr Hughes. “As soon as I started war-farin, my memory improved and I found I could walk,” she said. “Professor Hughes and his team gave me back my life.”

    She first suffered repeated miscarriages, memory loss, confusion and a loss of coordination 28 years ago. The Department of Health was “not aware of any evidence that population screening would be beneficial”. Yet a survey at the lupus centre indicated as many as 32 per cent of patients suffering from Hughes syndrome had been diagnosed wrongly or treated for MS.

    “The indications of MS and Hughes syndrome are extremely similar, even down to the MRI scans,” Professor Hughes said. “They can be extremely difficult to diagnose, but a simple blood test can make all the difference.”

    He recommends that two blood tests be offered routinely to any MS patient who has suffered recurrent headaches, problems with clots, a family history of autoimmune diseases, or who has had recurrent miscarriagesTell-tale signs of Hughes Syndrome

    · People with Hughes Syndrome have abnormally thick or sticky blood, which is prone to clotting

    · The blood often lacks oxygen, which prevents the brain from functioning properly. This is why many of the symptoms are similar to those of a neurological condition such as MS

    · It is not known why people develop it, but illness or surgery are possible triggers

    · It affects about one in five hundred and accounts for one in five recurrent miscarriages, as well as one in five strokes and cases of deep vein thrombosis in young people

    · Symptoms can include abnormal movements, memory loss, seizures, angina, blotchy skin and headaches

    · It is treated with blood-thinning medication such as aspirin, heparin or warfarin. One junior aspirin a day may make a difference

    · Contact the Hughes Syndrome Foundation on 0207-188 8217 or see

  2. ckball

    ckball New Member

    Great article. It could be life changing for many. Thanks for posting. I know I don't have sticky blood. Just a fignerstick for a blood sugar seems like it doesn't want to stop.

  3. tansy

    tansy New Member

    but also have raised fibrinogen and have had a pulmonary embolism in the past. Since using enzymes for ISAC (coagulation) the classic bleeding and bruising has stopped; I still get the petechial rashes though.

    I've only had one blood test since using these enzymes (2004), my platelet count had gone up to almost 100 (the highest since becoming ill) and my fibrinogen level was lower. Looking through past test results the lower my platelet count the higher my fibrinogen.

    Because I was thrombocytopenic I could not accept ISAC in my own case; but treating it turned out to be very important. It's not Hughes Syndrome; instead it's ISAC that many ME/CFS and lyme disease specialists (including the FFCs), are finding when the right tests are done.

    Hughes Syndrome is treated with aspirin and warfarin; ISAC is treated with heparin and enzymes to break down fibrin build up and control fibrinogen levels.

    It's worth having Hughes Syndrome tested for though; a small number of patients in the UK, who had been Dx with ME or CFS, actually had Hughes Syndrome. Different illness, different treatment, but many overlapping Sx.

    TC, Tansy[This Message was Edited on 08/23/2006]
  4. Shannonsparkles

    Shannonsparkles New Member

    I hope that this screening blood test will be made routine for suspected MS cases. It's wonderful to see people recovering after being paralyzed for such a long time. And it's awful that they were told they had a disease that had no hope of recovery.

    Prickles would tell us to always keep searching for refinements in our diagnosis, in case we learn that we have conditions that are treatable. Since there isn't a routine lab test specifically for diagnosing CFS and FM, many of us may really have something else and have gotten a wrong diagnosis.

    ((searching...)) Shannon
  5. hugs4evry1

    hugs4evry1 New Member

    Thanks...another interesting article. (Are these being included in the other thread for gathering articles?)


    Nancy B.
  6. victoria

    victoria New Member

    interesting article, I'll be passing it on!

    all the best,

  7. Waynesrhythm

    Waynesrhythm Member

    Hi Tansy,

    I haven't seen you on the board recently, hope you are doing well. I just started researching Hughes Syndrome today and was able to locate this excellent article you posted a couple years ago.

    I was wondering if you or anybody else might have any further information or insight on Hughes Syndrome and how it might be interrelated with CFIDS. I may post back here as I discover any further information that I feel is relevant.


  8. Waynesrhythm

    Waynesrhythm Member

    Thought I'd post the following from the Hughes Syndrome Foundation. There were other symptoms listed, but these two were ones many with CFS/ME often experience.

    Memory loss

    When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started.

    Gastrointestinal disorders

    Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause a condition called Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice (yellow skin), dark urine and the swelling of the abdomen.
  9. gapsych

    gapsych New Member

    Did the people who were diagnosed with MS who really had the Hughes Syndrome have plaque in the brain(?)?

    I know imaging techniques are getting better but wonder if the plaque always shows up.


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