APS AND EYESIGHT PROBLEMS : Hi my... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
9,092 members9,130 posts

APS AND EYESIGHT PROBLEMS

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.

44 Replies
oldestnewest

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

3 likes
Reply

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.

Reply

Use this forum as much as you would like to. MaryF

2 likes
Reply

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.

The eyes can be affected!

Return to Dr D'Cruz!

With good wishes,

Ros

5 likes
Reply

and yes Stereolover going back to see Dr D'cruz would be a good idea! MaryF

1 like
Reply

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!

Reply

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

1 like
Reply

I am so very sorry for your loss. Losing one’s mother must have been very traumatic for you and everyone.

I would encourage you to write your story. It doesn’t have to be for a charity but for you. It can be very cathartic and meaningful for you.

With good wishes,

Ros

1 like
Reply

It is hereditary as my dad had it I have it and my daughter has it

1 like
Reply

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

Reply

May I ask what symptoms your daughter has please? I fully understand if you’d rather not say

Reply

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.

1 like
Reply

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.

Best wishes to you both ~

Reply

I hope you get answers also. I had to educate my GP so now he is very good for us.

1 like
Reply

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?

Reply

Dear SL,

IONA, Ischemic Optic Nerve Atrophy. Optic Nerve Atrophy. It’s the death of optic nerve cells due to lack of blood flow.

It’s a known comorbidity of APS, and my USA hematologists and neurologists are aware of this. I have this problem quite severely.

In my case, I was referred to a neuro ophthalmologist.

I would absolutely see Professor D’cruz Again. From there you can be sent to the sub specialists you would need.

3 likes
Reply

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!

2 likes
Reply

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

Reply

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.

This is important for you to do!

2 likes
Reply

Sorry what do you mean with "wow I bleed" from anticoagulants!? Do you bleed from Clopidogrel or are you also on Warfarin?

1 like
Reply

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.

Reply

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.

1 like
Reply

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

Reply

It is Lupus (the illness) and not Lupus Anticoagulant (one of the three antibodies they test for APS)?

I wish you Good Luck!

2 likes
Reply

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.

2 likes
Reply

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.

Reply

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).

3 likes
Reply

I've been diagnosed with both and haven't had eyesight problems

1 like
Reply

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?

1 like
Reply

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

2 likes
Reply

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.

1 like
Reply

Thank you I live in Scotland don't think the anticoagualation is enough nneed immune suppression

1 like
Reply

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.

Best wishes to you in Scotland from a Swede!

2 likes
Reply

I’m wheelchair bound too Margot, I know what you’re going through. It’s tough.

My son is 19 and can’t remember seeing me walk. We have to keep battling through whatever is thrown at us. Take care

Reply

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

2 likes
Reply

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? :)

2 likes
Reply

What anticoagulation are you put on for your APS?

1 like
Reply

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.

1 like
Reply

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.

1 like
Reply

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.

1 like
Reply

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.

1 like
Reply

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.

1 like
Reply

Crikey that really does sound scary! I’m glad things seem more controlled now

Reply

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!!

1 like
Reply

You may also like...