Could anyone please give me some advice on hughes syndrome and the link with MS?

Hi Everyone. For the past three weeks i have been falling into things, having tremors, numbness and pins and needles in my arms and feet, headaches that wouldnt go away although medication was taken, visual disturbances, having the feeling of being drunk, trouble walking like i was drunk, severe abdominal cramps, memory loss(cant remember times and dates, peoples names and whats been on the television, cant do simple crossword puzzles, words getting mixed up), aches and pains like a feeling of flu like symptoms but no cold, anxiety, tiredness and fatigue, and slight bouts of earrache that last seconds but are sharp and very painful. My GP took bloods but not for hughes syndrome as he had never heard of it until today when i went for my results. Over the years my father passed away of pulmonary hypertension of the lungs, and in my case i was told when i had my polycystic ovaries(cysts burst under anaethestic) was told by my gynaecologist that i was able to conceive but not carry a child, had reaccurrent migraines in my 20's and then they returned with avengance 3 weeks ago to the point where i had to have an eye test because of a stabbing pain in my eye, and also taken off the contraception pill because it was causing DVT. My GP has referred me to see a neurologist and has said today that there is something inflammed in my body but he doesnt know where although i do suffer with spinal osteoarthritis. Is any of you who have this syndrome diabetic, because whatever it is thats causing these symptoms has pushed my blood sugars through the roof. As my GP has no indication of this syndrome he is looking through everything, but has said that MS is very difficult to diagnose as there are so many symptoms and illnesses that are linked but its not necessarily MS, and because of this he is dumb founded and is still pursuing other things and the more blood i get taken from me the more tired and lethargic i feel. How long do you have to wait before your diagnosed with the correct illness as at the moment im feeling like a pin cushion? Oh and before i forget my cousin has lupus which attacked her kidneys so badly that she had to have a transplant. Do i need to keep going through all of these symptoms and tests until they find out what the problem is? Why is MS linked to hughes syndrome? Any advice given to me would be so much appreciated so thankyou all.

11 Replies

  • My word you really are in the wars! Im so sorry to hear about all of this but at least your GP seems to be getting the ball rolling. You say that you are being sent to a Neurologist, when is that going to happen is it very soon? As far as MS and Hughes is concerned, there is some thought that MS is an autoimmune condition. Some people can get misdiagnosed with MS when they actually have Hughes Syndrome. That is because when the blood becomes "sticky" the brain does not deal with sludgy blood very well which causes neurological symptoms. These can be quite similar to MS. Also the MRI of the brain can show lesions which again are often thought to be because of MS when in fact they are caused by clots. Taking an anticoagulant often improves the symptoms quite dramatically because it removes the sludgy blood and therefore improves the neurological symptoms. Some people can have both MS and Hughes Syndrome however.

    Your Neurologist will hopefully check for all of this but you must ask for Hughes Syndrome to be tested and ruled in or out. One word of warning however, unfortunately neurologists dont have a terribly good track record with APS, you may be lucky and the one you are sent to may be the exception as there are one or two that are great but I thought Id warn you. If you really want an APS dx you may end up having to go to an Haematologist or Rheumatologist. Please let us know how you are getting on and I wish you luck with your test results. x

  • Thankyou so much for your help and advice. You seem to know alot about this condition. What did you have to go through to get the support you needed. im presuming that you have the syndrome. My neurologists appointment isnt urgent, infact is june 11th at 10am so my GP hasnt or doesnt think that its that important or serious. After this morning i may have changed his mind as its so new that he hadnt even heard of it and hes the boss so what does that tell you how much of a struggle im going to have getting things sorted?x

  • Im sorry to hear this but its a story we hear all too often. Your Gp does have the option to ask for an urgent referral but I would not know how long that would be in your particular area. If you could let us know your rough location we could see if there were any APS specialist near you that you could ask to be referred to as well as the neurologist. Alternately the only other option open to you would be to go privately to London Bridge Hospital in London if you thought that might help. We can give you the details to contact them if you thought that might be an option. If you did that and got a firm dx they would give you a care plan to take back to your local area and GP who could then refer you to an appropriate specialist.

    Yes I have the condition and I have learnt as I have gone along. Im afraid like most of us I had to go through quite a lot to get the support I needed including going to London Bridge. Sometimes you just have to sacrifice somethings in order to have peace of mind so I go without in order to save to have that. In the end its worth more to me.

  • Hi there, you can have specific blood tests done to test for Hughes Syndrome, and we also have many medical papers you can print out from our site. MS Hughes Syndrome can cause very similar symptoms, which is why there is sometimes confusion with the diagnosis. I do hope you can tell us where you are, this way we can help you show your GP where to send you, for the right tests. Best of luck Mary F x

  • im in malton north yorkshire. i cant afford to go private as im on ESA benefit due to my spinal osteoarthritis.

  • Charlie if you get in touch with Kate at HSF she can give you the nearest specialist from a data base we are compiling so you can asked to be referred there.

  • heya. Thankyou hun. Will do. Ive had more bloods taken this morning, but because it was with the blood nurse i couldnt very well say to her 'Oh can you ask Dr.Lynch if he wants to add this hughes syndrome to the blood testing?' as i dont know as yet if hes read up on it. I just got told not to look up on the net although i didnt find my symptoms first and went with what i was told. I got the results back that were positive and because it revealed that my blood was sticky and it was my partner who typed in the words 'sticky blood' and it was there where he found the HSF web page but i found your site yesterday thats why i asked those much needed questions that i wanted to know the answers to who come from people who are professionals and are going through it. If i do have this hughes syndrome then i want to catch it early because i dont want to end up dead in 5 years like my poor lovely dad did. Bless him because they didnt know about this he was put on warfarin and just deteriorated very quickly in 5 years to once a fit healthy man to a total shell of his former self and ended up on permenant oxygen wherever he went. I watched him and from some of the messages ive been reading from other sufferers who are suffering terrible with haemorraging and coughing up blood clots and GP's not knowing what it is i want to catch mine early like i said so i can live a full and happy life not like my poor father, if you can see my meaning. I just cant understand after so many people are suffering badly with this and have done for years who are still alive, and my father dying like he did in 1991 then that 20 years ago plus how is it just being diagnosed now and GP's still dont recognise it because its been never heard of as its so new. What im saying is the symptoms have gone on for years but the diagnosis hasnt. I mean what did they do before finding this let people die until they found out what the cause was and then gave it a name, what? It makes me so upset and angry because if this is the case then my dad wouldve lived for many many years with it as long as he was treated properly, but sadly it was left too late.xx

  • how many people in this country have this hughes syndrome. is it those of them who have registered on here or is there more. Its just GPs have never heard of it and my father had these symptoms but that was 1985 to 1991 but this syndrome wasnt found, and yet it supposed to be fairly new.

  • Hi Guys! I have also been to my GP and told her about Hughes Syndrome and she wasn't even knowledgeable I also told her about my Mum and sister who have died on Brain Bloodclots also my sister who is still living is on Warfrin for life through bloodclots I have also had Dvt and PE and lots of other things with circulation migraines zigzag headaches numbness in hands and arm and she has no concern does she want me dead and then they find out what was wrong with me because of negligence i had a Dvt and PE and when i was coughing blood still said there was nothing wrong with me until i was collapsing allot. And was hospitalized for two weeks. 15 mg a day Warfrin I am really sick of having to prove there is something wrong with me. This is 3 yrs on and I still don't know what is wrong with me memory in a fuzz most of the time. I have Laryngitis feel like i am fuzzy headed My eyes feel strange a lot dry eyes out of focus and blurry dry eyes. You have to be dead before they listen and I am sick of all this. Fell like a hypochondria going to the doctors.

    Sorry for going on but this has ruined me since I had the Dvt and PE

    They are sending me back to Neurology

    Thank you for taking time to listen to my miserable story.

  • Hi Lizzy, your treatment is clearly not acceptable but sadly we do hear about this sort of thing quite a lot. From what you are saying it could be that two things are happening, first after you have had your thrombotic events your blood tests have not shown you are positive for APS. This was also my situation and for 25% of APS patients who get negative blood results and then get dismissed as if they don't have the condition. Secondly you also sound like you could have Sjorgrens from your description with your dry eyes and this too very often runs along side APS also with Thyroid Antibodies.

    You need to make an appointment to see another GP in your practise, take with you information that you can download from the Hughes Syndrome website especially the studies on seronegative APS and insist that you are referred to an APS specialist. If you can tell us were you are located we can suggest the nearest place or contact Kate at HSF or through here by sending her a PM and she will send you some respected Dr's names you can ask you GP to send you to.

    Please let us know how you are getting on. X

  • Thank you for your help I am in Southport Merseyside with the Triinity Practice Hoghton Street PR9 - 0PQ Any help would be appreciated very sincerely x

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