I have MS, but I think it might be Hughes

Hello,

This is my first post here, I have had MS symptoms for about 20 years, it's 10 years since I was diagnosed with MS and it's now progressive affecting mainly my legs, but I do have other symptoms.

The reason for this post is the fact that I was prescribed anti-coagulants for a blood clot in my leg a fortnight ago and I immediately found an improvement in my symptoms. It has now levelled off, but there is still a gain in energy, flexibility and mobility with less fatigue.

I posted on the MS Society asking if it's normal for blood thinning meds to improve MS symptoms and a very helpful member (Mully) suggested I look into the possibility that I may have Hughes Syndrome as normally MS wouldn't respond like this.

Is it possible to be tested for Hughes whilst taking these meds?

It's Rivaroxaban that I'll be taking for the next five and a half months.

I haven't been to see my GP yet asking about the possibility of getting tested, I did see a practice nurse the other day about my blood pressure but she had never heard of Hughes Syndrome.

Does anyone have some advice about the best way to proceed.

Thanks,

Alan.

10 Replies

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  • HI and welcome, good news that somebody pointed you in this direction, please see article below and also page off our website. It would be good to familiarize yourself with the charity website. Firstly please get your GP to do these tests, they are a bit sensitive if left lying around for collection, so go for early morning testing or at the hospital. hughes-syndrome.org/about-h...

    and show your GP this list of specialists and the whole charity website: hughes-syndrome.org/self-he...

    The whole charity website: hughes-syndrome.org/

    and off the website again this page mentions MS: hughes-syndrome.org/about-h...

    article off the press: dailymail.co.uk/health/arti...

    Let us know how you get on.

    MaryF

  • Hello and welcome

    I agree with the very good advice that my colleague Mary has given you.

    One of Prof Hughes blogs described a case of a lady with a diagnosis of MS and who was in a wheelchair. After anticoagulation treatment she was able to walk again. (Mary could you look this blog up and point our new member to it please).

    Best wishes.

    Dave

  • I think this may be the article Dave referred to. copied from the Hughes syndrome website?

    Professor Graham Hughes August 2014 Blog

    The medical journal LUPUS, which publishes many of the research papers and conference reports on Hughes syndrome, runs a regular series called ‘Lupus around the World’. More than anything else, this series has highlighted the variation in lupus prevalence from region to region. Figures as high as 80 lupus cases per 100,000 are seen in many countries, notably in the Far East.

    Hughes syndrome is probably too ‘young’ a disease to justify such intense scrutiny, especially as diagnostic awareness is still variable.

    So how common is Hughes syndrome? Judging by the figures published over the last three decades, VERY common. Obviously, figures will vary widely – take migraine for example. In my view, this is one of the commonest features of Hughes syndrome – yet the true prevalence of positive antiphospholipid antibodies (aPL) – and of possible Hughes syndrome - in those patients attending migraine clinics is unknown.

    However, for those of you working to spread awareness of Hughes syndrome, there are some general figures now available from reliable surveys which have been published.

    Interestingly, a rough ‘1 in 5’ appears to recur in the proportion of patients with a number of conditions having possible underlying Hughes syndrome.

    Here are some examples (all from published studies):

    Young strokes (all under 45 years old) - 1 in 5

    Recurrent miscarriage -1 in 5

    Deep vein thrombosis -1 in 5

    Teenage epilepsy (excluding brain injury) -1 in 5

    There is still no such precise data for other conditions seen associated with Hughes syndrome – for example, angina (in women), stillbirth, Alzheimer’s and, of course, migraine.

    One condition where there remains great uncertainty is multiple sclerosis (MS). In my clinic at the London Lupus Centre, I see at least two patients a week with classical Hughes syndrome, whose earlier diagnosis had been MS. The current patient of the month is another such example.

    Patient of the month

    Mrs A.V., aged 47, a Spanish widow, had been diagnosed with multiple sclerosis after a series of episodes of limb weakness, balance problems, visual disturbance and headaches. An early MRI had shown white ‘dots’ in the brain. Over the course of a dozen years or so, her condition deteriorated and she became unable to walk and was confined to a wheelchair. In late 2013, she was seen by a neurologist here at London Bridge Hospital. He had doubts about the veracity of the diagnosis and arranged a new series of tests, including antiphospholipid antibody (aPL) blood tests.

    Strongly positive.

    He referred her to me for advice. Certainly there were features to suggest Hughes syndrome, including a long history of headaches and a dry eye test (suggestive of Sjögrens syndrome – an autoimmune condition commonly associated with Hughes syndrome).

    There had not, however, been any history of thrombosis. Nevertheless, I started Mrs A.V. on low dose aspirin as a ‘first step’.

    A month or so later, Mrs A.V. returned for a follow-up appointment. The door opened – and in walked a delighted Mrs A.V. No wheelchair.

    “A miracle”, she believed. And it was. Thanks, not to me, but to the neurologist who wasn’t prepared to totally accept the diagnosis of MS and ordered the simple blood test aPL.

    What is this patient teaching us?

    Firstly, the unpredictability of response to treatment. In Hughes syndrome when brain or spinal cord involvement is prominent, most patients require heparin or warfarin. And yet, this seriously incapacitated lady responded ‘miraculously’ to a single ‘baby’ aspirin daily.

    Why? We don’t know.

    Secondly, the links between Hughes syndrome and MS. We have known for many years that Hughes syndrome and MS can and do share many clinical features, and a number of studies, including our own, have addressed the issue.

    The results so far have been hugely variable. Positive aPL tests have been found between 2% and 88% of ‘MS’ patients.

    Clinical differentiation, as in this patient’s case, is often difficult and even brain MRI pictures can be similar.

    Some studies have suggested that individual aPL tests (eg anti-beta2 GP1) can be the sole positive test in occasional patients, while others have suggested a higher aPL positivity in patients with ‘atypical’ MS.

    In summary, until more diagnostic brain scanning techniques become widely available, the differential diagnosis is based on good old-fashioned history taking, with strokes, TIAs, seizures and headaches, as well as a family history of autoimmune disease (eg. thyroid, rheumatoid, Sjögrens, lupus or, of course, Hughes syndrome) pointing more towards a diagnosis of Hughes syndrome.

    So many lessons to learn. So important!

    Graham Hughes London

    Lupus Centre

    London Bridge Hospital

    thelondonluputscentre.co.uk

  • Thanks for wading through and finding this! MaryF

  • Hi Alan,

    A good start is to get the blood test for Hughes/APS. I live in the United States where Hughes Syndrome is called APS-Anticardiolipin. In my case they thought I had MS but my symptoms did not add up. I kept going around in circles because I had 2 positive test & then I tested negative for APS. Here in the US they want a positive blood test or they won't treat you. I finally went to London & saw Prof. Khasmashta. He told me the disease never goes away & that they test for only 2 proteins when there are approx 60 more. So, even though I tested neg probably I or more may be positive. I tell you this is because if the blood thinners improved your symptoms there is a strong chance you may have it. You can have both MS & APS. I found it was best to do your own research.

    I have Hughes & it has affected the nerves in my spine & my legs. Prior to taking the Clexane I was so stiff & could not move. My daughter & husband thought I was dying because my symptoms became so severe. Almost immediately after taking the Clexane( blood thinner). I was walking with the walker, the stiffness diminished, my brain was back, and I wasn't in the ER every other week. 2 years later I am still in the wheelchair but I can tolerate the therapy & making progress. The headaches are gone. I am still having trouble getting my blood thin enough at times & I have learned to tell. Even my therapist can tell.

    Good luck!

    I hope this helps.

    Designer16

  • "He told me the disease never goes away & that they test for only 2 proteins when there are approx 60 more."

    This says all..Thank you for your comment, designer16 .

  • I'm not sure if there are any Neuro-related diseases which aren't autoimmune apart from obvious injury-related problems causing neuro issues. Neurology is traditionally simply too lazy to find out the "real causes" of a number of serious neuro issues by simply fitting patients into a category of diseases e.g. ms, motor n, parkinson's, alzeheimer's, epilepsy etc etc. Sorry to sound harsh. x

  • Hi everybody,

    Thank you all so much for the responses to my post, I've been to my GP armed with some info that MaryF gave me links for, the response from the GP was great.

    She was very interested in my condition and theory, was keen to read the printouts I took with me and has made a referral to a Haematologist from the list of Hughes specialists for a consultation a.s.a.p.

    My GP also said she might review her other MS patients to see if anyone else would benefit from testing for Hughes, I'll be delighted if this means others may get the help they don't even know they need.

    She said I made her day!!

    Thanks again, I'll post an update when I have news.

    Alan.

  • That was really a great GP. It could not be better

    Best wishes from Kerstin in Stockholm

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