Hi my neurologist recently told me that Hughes Syndrome and MS are extremely rare to have together. She said I’m labelled with MS only because Hughes Syndrome cannot affect your eyes. I did some research once I was home from my appointment and unless I’m going mad, it read to me that yes, Hughes can affect eyesight. I was diagnosed with optic neuritis in 1990 and apart from Prof D’Cruz who is a lovely doctor I’ve been treated like dirt by every single neuro since my diagnosis back in 1996. I take 75mg Clopidogrel daily and have noticed no difference in any symptoms. In fact I still get what I call ‘traces of broken splinters’ in my nails. Prof D’Cruz was the doctor who checked my nails all those years ago. He said it could be a sign of Hughes.
So my question is, “Is it common to have both Hughes and MS?”
I’m baffled to be honest.
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HI, one or two people on here do have MS as well as Hughes Syndrome/APS: ncbi.nlm.nih.gov/pubmed/792... The nail symptom is not that unusual for Hughes Syndrome/APS. I also found this for you: ncbi.nlm.nih.gov/pmc/articl... have you had a good look through our charity website: ghic.world/ We do advise our members on here to get the GP or consultant to test their levels for B12, D, Folate, Ferritin and Thyroid, to make sure nothing else is going on beside the actual diagnosis. Low B12 levels can mimic MS symptoms. MaryF
Many thanks for the links MaryF. Lots to read and listen to which I’ll do tomorrow. I feel angry that my neurologist told me APS doesn’t affect eyes. My GP had never heard of APS and sent me for the wrong blood tests initially. I changed to a different GP a few years ago but sadly the surgery has changed so much and not in a good way. You need to know you’re going to be unwell a month in advance as there are only 2 GP’s there full time - one is the GP I stopped seeing (for several reasons) the others are locums.
I admit that I worry so much about blood clots especially as I haven’t walked for 13-14 years.
I need to learn more and I’m going to buy the book that was mentioned.
I’m so relieved to have found you all, I don’t feel so alone any more.
I am not a medical doctor. However, any doctor who says that x is impossible is someone who doesn't understand Hughes' Syndrome.
Dr David D'Cruz is excellent, trained by Dr Hughes, after whom the Syndrome is named. Dr Hughes has written many articles pointing out the number of misdiagnoses claiming the patient has MS when s/he has Hughes.
Dr D’Cruz really is a lovely man. What a shame neurologists aren’t. I keep saying I’m going to write a book one day about my ‘journey’ and neuro treatment. My mum died of a pulmonary embolism a couple of days after an op for a breast reconstruction and I was diagnosed around 4 weeks after. A surgeon told me my mum probably had APS too as it can be hereditary. My neuro said it wasn’t. I’m so glad to have found others who understand the confusion so thank you everybody!
We have somebody at the moment writing a book for our charity, and she is not the first, a great idea, each patient journey published is so useful. MaryF
So perhaps my mum did have it. I’ll need to get my son checked too so it’ll be a battle with a GP now. Firstly I’m going to ask for a referral to Prof D’Cruz and go from there
She had a clot in her brain and was very ill for quite a few weeks but has now recovered. She was only 22 when it happened and was diagnosed by proff Hughes as was I . I had 5 pulmonary emboli and was very lucky to also get proff Hughes.
I’m so sorry to hear what you have both gone through but fortunately you saw the top man who I imagine has put you at ease. I think there should be more publicity (for want of a better word) because I’d never heard of it until I read the case of a man in a newspaper who had been misdiagnosed for decades. Only then did I ask to be checked.
I’m in a state of confusion right now. I spoke to a GP to ask for a referral to go back to Prof. D’Cruz this morning & to also ask about my MRI I recently had. The GP went through my records and said I was diagnosed in 2007 - time flies.
Then the biggest shock..... She said St. Thomas’ hospital NEVER said I have Hughes. Apparently I have Lupus alongside the MS. I’m completely baffled, stunned & so confused because it’s on my medical records that I have APS. Even more need to see Prof D’Cruz again. My neurologist thinks I have APS so there’s some confusion going on, most of which is swirling in my head at the moment. I was NEVER told I had Lupus & to be honest I’d put money (if I had any) on me having APS.
I have to hope the senior GP’s allow for the referral. If they don’t I think all hell will break loose?
The Neurologists do not usually understand that APS has to do with too thick and sticky blood. MS and APS have several neurological symptoms together and APS is still rather unknown and very few Doctors know about it.
Therefor we need a Specialist of Autoimmun illnesses who works with those illnesses daily and knows APS well in particular. As Prof D´Cruz.
Clopidogrel 75 mg may not be enough to thin your blood and therefor you notice no difference in symptoms.
Good Luck and please let us hear how it goes for you!
I’ve often wondered if the Clopidogrel is enough because of the ‘splinter bits’ I still get. I think I’ll ask to be referred to Dr D’Cruz again for peace of mind if nothing else. Like anybody on anticoagulants when I bleed, wow I bleed
What I have learnt Clopidogel alone works like Aspirin and makes the blood a bit thinner but it is not a real anticoagulation-drug like LMW Heparin or Warfarin.
As so many of us who knows APS have suggested now, you should look for a Specialist and you have seen prof D´Cruz who has worked with prof Hughes earlier.
I bleed from taking Clopidogrel. My blood clots once it’s out my body. I have knocked toenails off before without realising (my feet are usually numb) and it isn’t a pleasant sight. If I have an operation I have to stop the Clopidogrel and inject into my tummy for a few days beforehand. I’m not sure if it’s called Clexane or Heparin but have been told is isn’t as strong as Clopidogrel and doesn’t stay in your body as long.
I am afraid that I can not answer this as I do not use Clopidogrel and do not have enough knowledge either about that anticoagulation drug but thought it was like Baby-Aspirin 75 mg to start with when you have got a diagnosed and you have got no clots etc yet. As to the bleeding I do not understand that. Good that you are going to prof D´Cruz again soon.
I received 2 letters which were kindly printed out for me by a secretary at my GP surgery. MS & Hughes are barely mentioned but it seems that Lupus is definitely what I have according to what’s on paper. I have to have a telephone conversation with somebody on 25th to discuss things. If I’m lucky I might get the chance to be referred back to St. Thomas’ but if necessary I’ll borrow the money to see Prof. D’Cruz for a consultation.
I’m so confused and upset but I’m so glad I found all you lovely people. Thank you all
ACTUALLY.... I did not get a diagnosis at the time, and I had no eye symptoms (and no other symptoms then either ) but back in 1998 my opthamologist, Dr Francis, did not like what he saw - my retinal capillaries looked different from my exam the previous year. He suspected Hughes, ordered a cardiolipin antibody test and ordered the results sent to my GP ( whose office lost them.) So apparently, astute opthamologists can see a difference in the eye. I developed migraines the next year, the migraines morphed into TIAs, which morphed into mini strokes and I was diagnosed with Hughes in 2001.
It’s amazing what an eye test can reveal. I have mine checked every year and I haven’t got any worse for the past 3 years. My right eye is very strong but my left is the one with ON.
I had a lot of eye-issues like diplopia (seeing double), Amaurosis Fugax, AURAs etc. After a steady and proper anticoagulation with Warfarin, with an INR around 4.0, I now do not have those symptoms anymore, only sometimes some Aura but I am not worried about them.
I suggest you buy "Sticky blood Explained" by Kay Thackray. She has got those symptoms and writes about it in her book. A very good book about APS (said by prof Hughes also).
Not everyone with APS have neurological symptoms with eye-issues. Good that you do not have. I guess there are two different Specialists who have diagnosed APS and MS. Is that so?
Yes you're absolutely right and neither really wants to take responsibility for me so apart from wafarin I get no treatment, despite being in a wheelchair x
Oh, I am sorry that you have a very difficult situation.
We here know how difficult it is to be taken seriously by an APS-Doctor if he is not knowledable in his profession and wants to help his patient first of all.
These autoimmun illnesses are difficult to distinguish as several go hand in hand with different symptoms and antibodies and so very few Doctors still do not know APS well. In what country do you live. I guess it is England. I live in Sweden.
I hope that your Warfarin helps you to keep a steady and proper anticoagulation to avoid further and less symptoms. You can write a question when you like and our members are knowledable and with a big heart.
I know that Warfarin can be very difficult to manage without near to the lab or with no selftesting-unit and perhaps also with Lupus Anticoagulant positive in our blood.
Do not hesitate to put up your own first question here. Maybe you will get help to find a solution.
Thank you it's some kind of comfort to find someone who understands because people just "don't get it" and I'm so sorry you've had to deal with it for so long, you take care too xx
i have been diagnosed with both. i was dx’d with MS at age 26 (they think i had it longer). i had repeat MRI for years now. i am high functioning but i am quite dizzy- chronic vertigo that no one can explain. i was told i had high cardiolipind and all the proper blood tests were done for Hughes. I saw a specialist in nyc who basically said, no clots no meds. but who said yes i have MS, just unlucky. my eyes have been bad since childhood. optic neuritis is the easy part. cataract and then RP Retinitis Pigmentosa. no one else in family has it—- i believe no drs ever. have seen all the “best” in nyc and i have suggested so many options. yes my vitamin levels are “perfect” but alas, i am a different kind of perfect. no dr has ever said i cant have both. join the club?
none. all my drs (neuro and aps) said keep going. they agreed i have no other symptoms or history so no meds. my MS i manage with homeopathy, strict diet.
That would worry me to know my blood was too thick/sticky and not to be given any thinners. I want to take Turmeric but apparently I shouldn’t because it thins your blood.
i drink lots of turmeric tea, actually. so maybe that is helping me. but i guess if you are taking blood thinners, you shouldnt. i eat lots of ginger too.
Well. My eye sight problems were what led me to the aps diagnosis. I had amaurosis fugax and as they were my second possible stroke, I was tested for aps. Still not an easy journey but warfarin has stopped the visual loss (amaurosis fugax) but not the visual disturbances which bug me daily. I put it down to aps all the same.
I have had three different eye issues that I have had to deal with that were directly related to my APS. First, vessels leading to my ocular nerve we’re swollen and broken. This is called Papillodema. This was caused by Intracranial Hypertension ( microclots). A second manifestation was ocular migraines, a transient event where fields of vision are temporarily lost. A third and most scary was Vertigo. It caused the room to spin and once all the signs along the highway went upside down. All of these manifestations were caused by clotting and went away when I was properly anticoagulated.
Hi, just wanted to comment that I have Aps, and it strictly effects my eyes. I get other symptoms, but for the most part I mostly get these"clouds" in my eyes, which is what made me got to the Dr initially...So it definately can affect your eyes!!
I asked my neurologist in March of this year if it was common to have both MS & APS to which she said, “No it’s very uncommon and the only reason you (me) are diagnosed with MS is because APS cannot affect your eyes.”
I only read the first sentence but Hughes Syndrome can effect ur eyes. My eyesight has down graded so much. Not even from strokes in Eyes but from damage to neurological system. The massagers from my eyes to brain and back do not work correctly due to stroke damage!
I’m so sorry to know that. It’s also a sorry state that these so called consultants don’t know their jobs. I know it can affect eyesight as you know only too well. I’ve given up on neurologists. I’ve been treated like dirt since I was diagnosed with MS in 1996. We’re banging our heads against a brick wall, well here in U.K. at least.
🤦♀️🤦♀️🤦♀️🤦♀️ my first neuro told me I needed to stop working because I couldn’t handle the big world of jobs and business! I told him I couldn’t quit working I had kids to raise and bills to pay, he said “but ur married “ I said yes but not to a (I will clean it up for the site) ****en DR! Second neuro said it was spastic leg syndrome I asked if he felt that encompassed my symptoms he said No, so I 🤷♀️he just shook his head. What amazes me is how shocked they are when u won’t schedule a follow up!!! The second one almost followed me out the door with his Dr book to show me. Won’t even talk about my 3rd neuro. I give them new names. They would not like the names. My PCP is aware of some of my new names and has to agree with me! LOL they forget that just because u aren’t a dr. Doesn’t mean u are not smart enough to be a dr. My IQ was in the 170 area. Of course now it feels like it is about 85 means I can walk and chew gum at the same time if I concentrate hard enough! LoL We all don’t have the same options in life there is a major difference between upper class up bringing and being the 5th kid of a waitress/bartender. Ur personal option diminish greatly. Not that I’m above anything I worked-as waitress and as a bartender as well as an auditor/inspector that terrified big and small companies. But my clients learned I was cool. Never looking to charge someone just have to follow the rules unless they want to pay me to stay home! Most my clients licked me and watched me degrade. 😐 some still call me! Anyways, to me, dr’s are really no different then ur mechanic they are just trained in a different line of work!
Soul Rebel
Make today a good day & trust me if ur sense of humor is demented enough every cloud has a silver lining! ✌️🤟🏼🤘😎😊💜💛
Yep they can be. They think they can feel ur pain. But the. Again they just recently, last year or 2, did a study and came to the conclusion that TIA’s can and be leave brain & neuro damage even though u may not c it. They only needed to ask us. Think of all the money they would have saved! It is harder for women to get diagnosed because dr think 🤔 T’s just those messy hormones. They actually did a study on either &/or ovarian, uterine and breast cancer. All the subjects in the study where males! Yes they get breast cancer but not the other, this study was completed in 1990!!!! Dr are taught women’s bodies are just like a man but with messy hormones. All our health problems are n r head, made up or just those pesky hormones! 🤦♀️🤷♀️😎
Well I know I have SLE though it’s not yet diagnosed, I gave up. As well as Sjögren’s syndrome, just like my sister. I did believe my earlier symptoms to be either Lyme or MS. They all carry a lot of the same symptoms. I do have, as others here probably due, demyelinating it my nerves n brain but not in the way that MS causes it. They share symptoms but differ greatly n some areas. My symptoms started in 1993 one at a time, slowly building up. I was in the middle of a thrombotic storm when I was diagnosed in July 2009! I was having up to 8 noticeable TIA’s daily. However, unlike most(I think) i has two wholes in my heart, and ASD & a PFO that we allowing small blood clots to jump sides in my heart and Not get filtered out and oxygenated thru the lungs. Instead they where shorting straight to my very blonde brain causing all kinds is of fun stuff. I also had a PE around 2004 I didn’t know what it was and u was suffering from sever allergies at the time that caused a terrible cough and I just figured I had coughed in a really bad position or irritated the lining of my lungs as had happened in the past. Even though it was significantly worse then past problems it never Occurred to me it would be an PE. Somehow I lived without any medical intervention! Dr can’t explain it. My body closes off approx. 2/3rds of my right lung. No air in no are out. No bleed outside the closed off section. When CT’d or X-Ray it looks like an active PE. Drs couldn’t figure out what it was but luckily they decided, very last minute to NOT remove it. My diagnostic hemo I love that man! He said to leave it be. It’s not hurting me. Unless I start getting frequent chest infections due to it. It should be left alone. He is the first one to diagnose it, on my first visit and he said I had at least 1 whole n my heart which unfortunately took another 2 years to get diagnosed and surgery to close then in 2011. Therefore I have had generally a lot more Tia’s & CVA’s then ur average APS patient. When the surgery was done my face looked better and my TIA’s went from up to 8 times a day (that I was aware of) to just a few a month. Unfortunately my diagnosing hemo is no longer practicing. 😭 I have had no luck since the last time I saw him in getting anything diagnosed. Must be those darned messy hormones again! 🙂🤦♀️🤦♀️🤦♀️🤷♀️🤷♀️🤷♀️ ✌️🤟🏼🤘😎 man I miss him! He was wonderful and he saved my life. That first appointment he said if we didn’t get my strokes under control if I was somehow still alive in 10 yrs I would be in complete dementia. I still have them but I still have some of my 🧠 left & most important I know who my family is and that they love and support me more then should be expected! Gotta love em! Actually my husband was believing the drs not me. But I had my PCP on my side and she sent me to dr after dr after dr until I found my savior my Hemo, my hero!
Ok got to stop the long long long responses and get to work. Got family coming In so I need to do all that stuff I have put off the last yr in two days!
Yes, I take 75mgs of plavix and usually about 13mgs of warfarin. Sorry I really did get myself going just winding down. I am seriously going to pay for what I did today and what I still have to do tomorrow! My body is going to get even with me! Not looking forward to that! Do you take blood thinners? Do u have APS? Anything else?
I take Clopidogrel to thin my blood. I was diagnosed with APS in 2007.
I read about a man who had been diagnosed with MS for many, many years but he didn’t have it. It was APS and if I remember correctly once he began his anticoagulants he led a normal life. I have secondary progressive MS. I haven’t walked for approximately 12-13 years. Isn’t how I expected my life to be but it is what it is.
Rest, you know your body better than anybody else and by overdoing things you’ll suffer. It isn’t worth it.
Sometimes u have to do it even if u are going to pay for it, at least I do. There isn’t much choice. I’m very sorry to hear u have lost ur ability to walk so long ago. I use canes and sometimes my wheelchair when I’m really off. Not that it compares in anyway to what u are going thru. Clopidogrel is the off label name of plavix, it’s what I take to. No fancy name brands here! My hemo said I would never come off the warfarin and that none of the new meds would work for me that warfarin was best no matter what any other dr tells me. So I’m sticking with it. Was supposed to get off the plavix 2 yrs after my heart surgery but every time I try to slowly go off it I become more symptomatic. So I still take it. Scares my pharmacists but works best for me.
You know your body better than anybody else ever will so keep taking what you’re taking. Before an op I have to stop Clopidogrel for a few days and inject into my tummy instead. It’s been a long time since I did that thankfully!! Take care
Try to find a Specialist (not a Neurologist) of autoimmun illnesses. A Rheumatologist could be good or perhaps an Hematologist. They should have the gut to give you a LMW Heparin-trial.
When you speak of that man who had a normal life after anticoagulation I wish that man could also be you. I suddenly remember Jesus could make a man leave his wheelchair or what they had at that time.
What autoantibodies have they found on you? APS-patients may have problems with eye. I have had that before anticoagulation. That Neurologist had read a very old book about APS. We know here that the Neurologists sometimes do not get that we have too sticky blood. It is difficult to see the difference between MS and APS. That is a fact.
The doctor whose care I was under was trained by Professor Hughes so I trust him completely. He said it was the result of my lumbar puncture that proved I have APS.
I’m happy on Clopidogrel, it’s a relief for me actually because being immobile would be a huge worry. I also sleep with my bed at an angle which is good for everybody, you don’t need an illness. On Facebook it’s called Inclined Bed Therapy, honestly it’s so interesting.
I do not understand now; the Doctor who was trained by Professor Hughes, was that the Neurologist? You talked about"an ignorant attitude".
Has no one suggested you should try LMW Heparin to see if your numbness etc could ease a little. I thought you were immobile at present as you said before that your 19 years old son could not remember seeing you walk!
But now you take Clopidogrel and can walk!! So you did not have any antibodies positive?
I also sleep with my bed at an angle as I have Pulmonary Hypertension.
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