New and worried

Hi, I was recently diagnosed with this condition but have not had (thank God) any clots, miscarriages etc. I was diagnosed after having very strange symptoms following a very stressful divorce a couple of years ago which lasted 2-3 years. After frequent visits to the consultant they finally came up with this diagnosis. What I would like to know is if the symptoms I have been having are part of this condition or have they have just detected this in my blood by chance due to the frequent unusual thorough blood tests they took from me.

It started with what I can only describe as trickles in my forehead and scalp on one side only. (I was convinced it was a brain tumor) It feels like something is crawling on my scalp/forehead a bit like when water has dripped into your head from above. (MRI scan is clear) On top of that I had pulsating tingles in my foot which travelled up my leg to my knee. I also on occasion wake trembling on the inside (not externally), as if my whole body is vibrating. Fatigue (not just your standard tiredness), hair loss (round hairline and getting worse), palpitations, fuggy thinking (B12 helps with that a lot) and just generally feeling not me!

I have tried lots of self help medications, ie, cod liver oil, magnesium (these were suggested to me by my neurologist) and have noticed a slight improvement. But wondered if anyone out there could advise/comment if they have anything similar.

Im not on any medication, doc felt it was unnecessary, but now after reading about it and what it can cause, stroke, heart attack, clot etc, Im very scared and restricting my exercise regime.

Other than that I would consider myself a fit and healthy 40 something woman. Had no problems apart from IBS prior to my stressful episode.

Any suggestions?

Many thanks

21 Replies

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  • Hi there, and a big welcome to you, you have landed in the right place. Firstly don't panic, some of us have this disease to varying degrees. However I would have thought you should probably at least be on aspirin. I myself despite having had clots during pregnancy and just after... get by on aspirin, 75 mg which I take twice a day on full stomach, this has made a huge difference. However you do need to get yourself referred to either a rheumatologist or haematologist with expertise with this condition. We can help if you can let us know where you are located. You are lucky to have had an early diagnosis and to catch things before they get out of hand. Any good medic will also do something about your fatigue. I hope you can feel a little less frightened you are in good company and in the right place to get this sorted. Mary F x

  • Thank you for your help. Im going to see my GP next Tuesday so will mention this but I had assumed my neurologist would know all about it, but it appears not - hes the one who said I didn't need to be on anything. I didn't realise I should be seen by a rheumatologist or haematologist. Will let you know how I get on next week. Thankyou.

  • Yes, that often happens, AND you need to be referred to either of the two mentioned above, but ONLY if they have knowledge of this condition: There are plenty of articles on the Hughes Syndrome Foundation Website which you could print out for the GP, and if you can tell us where you live, which area, others on here will be able to help you with the correct referral, otherwise you may go around in circles. Mary F x

  • Great, Im in the UK in Greater Manchester, Lancashire area and my GP is within the Wigan Borough.

    Thanks

  • Ok, there is knowledge about this condition at Leeds Hospital, (Infirmary), and others on here may come on and say there is something nearer. Many people try and get themselves referred to St Thomas' in London which is quite some distance for you. I am sure at some point, somebody will come on here with more detail, such as a name for you within that hospital, at Leeds. Mary F x

  • Hi MissDaisy - there is an excellent APS expert at Manchester Royal Infirmary called Ian Bruce. He helped train a lot of the doctors in London and is a world authority. He is the Clinical Lead at the Kellgren Centre of Rheumatology - telephone number: 0161 276 4357.

    Hope this helps :)

  • Ah even better, I can't wait for that database to be up and running. and thanks for this extra info. Mary F x

  • Hi, Welcome to the group. I'm also in the new stages of finding out all the signs and symptoms myself but it sounds like what you have been experiencing is part of it. I agree with Mary that you should be on some kind of medication even if it is just asprin daily it just prevents other more serious effects of APS from appearing later on. IBS is again another symptom of APS which means you could have been suffering for years before your diagnosis, this is definatley the hardest step.

    One thing I have learnt: Voice your concerns!!!

    Good luck in finding your feet with this one :-)

  • There are a couple of things that I have picked up on from your description of symptoms. The first is that I feel you should have your Thyroid checked as some of your symptoms could be consistent with a low thyroid. Also Thyroid problems can run hand in hand with APS so many people also have this autoimmune condition too.

    Secondly you mentioned you had IBS. This is commonly mistaken for Gluten Intolerance or possible Celiac Disease which again can run alongside Hughes. Many people can also test negative for this but actually have a false negative and when they cut out Gluten their symptoms of not only the usual tummy problems improve but also fatigue. So a trial period of GF can sometimes be a good idea to see if this helps.

    The ice cold water trickling feeling down the face is, Ive been told to do with nerves rather than blood. I get it a lot in fact I have it while Im writing this. I also "get" the internal trembling bit too. Sometimes I wonder if that is either a hydration or sugar thing but there are times I know this can't be the case.

    I hope you find a good Doctor who understands you as it makes all the difference. Neurologists unfortunately are renowned to be, shall we say a bit unhelpful!

    Keep us informed with your progress. x

  • Yes... well said above, Professor Hughes often brings up what he calls the trio of disease... Hughes Syndrome, Thyroid and Sjogrens. I have the three amongst others. Mary F x

  • Thank you all for your help - I will let you know how I get on. As an added extra stress I noticed yesterday bald patches on my hairline so I am completely freaked now and am picturing all sorts of scenarios. Feel like Im falling apart. Will keep in touch. Thankyou.

  • Be aware that thyroid issues do not always show up straight away in tests, mine did not, and thryoid problems cause hair loss. They should get to the bottom of it for you. Mary F.. and best of luck x

  • Hello,

    I just wanted to let you know that I have suffered from almost identical symptoms to you.

    The creeping feeling (like water trickling), The feeling of vibrating or oscilating inside,, especially at night, palpitations, brain fog, fatigue and other symptoms as well.

    I was diagnosed about three years ago and told I had damage to my brain caused by the illness. I now take daily Heparin injections.

    I would urge you to insist on being referred to the Rheumatologist Kate mentions as the illness does not resolve itself.

    Let us know how you are getting on

  • Hi, its good to hear that I wasn't imagining all these symptoms as the GP constantly put them down to stress. My MRI scan did show some 'white spots' and after checking for Tia's amongst other things and all being clear they couldn't exactly say what these were and said many people probably have them but I am a victim of scanning. I am scared about what the condition develops into and havn't googled too much for fear of freaking myself out. I will mention all this to my GP and insist on a referral to a specialist. Not sure what Heparin is so might google that but Im wary of taking asprin due to internal bleeding (witnessed that and wasn't pleasant). I have been labelled 'hypocondriac' for the last few years by my family but I think I know my own body and when its trying to tell me something, hence me pushing for tests. Answers a lot of questions anyway. Im glad I found this site, its good to know Im not alone or imagining this and that there is help out there and people who know what they are talking about. Thanks for all your help/advice. Will keep you informed.

  • Hi, I am sorry to hear that you are having problems. I sincerely hope you feel better soon. Most of us have been in a tough situation, especially if you don't know what to expect. I can echo your experience in terms of progress: I was more or less healthy; I had some mild migraines growing up, and mild IBS; at some point I was really stressed for about two years, and then I got a clot in my left leg. This is how I found out about Hughes. I wonder if this is a common pattern.

    I am not an expert on Thyroid, I just wanted to highlight that (temporary, of course) hair loss can also be the cause of stress. Speak with your doctor about it, it is definitely something that they should look into and help you resolve.

    Feel better soon!

  • Oh my I know this tingling in my head and the pulsating pin pricking to my toes. I had the head tingling after I was diagnosed as having shingles, it began with the most hellish migraine. At first they sent me home as I did not have the usual blistering associated with shingles, but the head ache got so bad that they diagnosed shingles !! I guess I'll never know if its APS or shingles but to this day whenever I get my really severe exhaustion along comes the head tingle..I'm on aspirin and hydroxychlorine but don't feel well on either. I have had numerous MC's but like you no other clots thank God..how interesting to read you suffer these symptoms to x

  • Hi, I am sorry you have APS but relieved you have been found before anything happening.

    Before they found that I had APS I too suffered a severe migraine.........then pins & needles & horrid pain in my right side also slurring & confusion.

    I too was convinced there was something wrong & after being told it was modern living & depression!! I swopped docs & she sent off the correct tests.........& here I am!!

    I take warfarin, loratadine (alergies) plaquinil (joint pains) zomigs & sumatriptan (migraines)

    I have had APS for 11 years now & I too when my inr goes low still get tingling in my face & what I can only describe as an ice cube being dropped into my scull?! thy say I am having TIA symptoms.

    Please remember you are not alone & we will understand it all x

  • Hi just out of interest is nerve damage a symptom of APS. Trying to find the cause of my jittery legs and pulsating nerves in my feet which tends to come and go.

  • Re. Risk of bleeding with asprin.

    Let me break this to you gently now -- you're special. As long as you have those APS buggers inside you looking for platelets to chew on and activate, your risk of bleeding is now profoundly different from non APS Muggles. Yes, some of us have bled while our docs were searching for the right anticoagulant and doseage. But it doesn't happen very often. By far the greatest risk for us Hughues is clots--not bleeds. Don't let the expected bleeding side effects of asprin, Helprin, warfarin or the rest scare you away from treatment. Your blood is sticky -not normal, and comparing your chance of a dangerous bleed to those Muggles with normal, non- dramatic blood is not functional. My therapeutic INR is 3.5 --which means, when my blood IN A TEST TUBE seems to be 3 and a half thinner then normal, it is actually INSIDE MY ANTIBODY LACED BODY behaving normally. If I ever let my INR drop to "normal" I can tell, you the migraines would come back, the headaches, the varicose veins would jump out again and I wouldn't be able to keep my balance well enough to walk!

    Good luck. See a rheumy who has treated APS before, and embrace your therapy. I will confess that I now have a deep, emotional bond to my warfarin! Others may call it " killer Coumadin" ( brand name) but to me the stuff is a lifesaver!

  • Hi, I am new to this community and just wanted to say hello. I recently found out I had APS (Hughes syndrome) as a result of tests done following 3 m/c, and currently awaiting to undergo IVF. I am currently on asprin and if the IVF is a sucess I will be on asprin and Heprin. - is that quite normal? apparantly by cardiolipin levels were very high.

    I must admit this diagnosis came completley out of the blue as I didnt even know this condition existed - but in a way I do feel relieved that I know what was going wrong. I was feeling down in the dumps a bit but after reading some of the posts and the poor woman who have so many losses before they were diagnosed I am feeling very grateful.

    I have lots of questions but I might just start by reading some of the community posts. - so hi for now.

  • Hello there and a very warm welcome to our friendly Forum. I'm glad that you have found us and I'm sure that we can offer you as much support as you need.

    I m sorry that you have been dx with this condition but its a double edged sword really, at least now you know what you have you can at least get the correct treatment for it.

    Try not to be too over whelmed with it all as it will all settle down in good time and others will come along in good time and help out with more individual advice.

    Have a good read of the information on here and think about joining the HSF charity where you will get lots of helpful info. They are launching a new website soon which will be very helpful but Kate can send you specific info if you need it.

    If you need anything else please don't hesitate to ask. X

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