Recent APS diagnosis and eye issues

[emma1210]

Hi,

I wondered if anyone might have experienced similar issues with their eyes and APS?

The brief back story is that in Sept 18 aged 35, I was hospitalised and treated for NSTEMI with tropinin rise of 270 - which was later downgraded to ACS likely caused by coronary artery spasm. I had multiple tests and was discharged by cardiology with no recommendations for ongoing treatment.

Forward to Oct this year - I experienced 2 episodes of sight loss in left eye and a horrendous bout of vertigo, which I have never had before. I visited a&e and was given urgent brain scans to rule out TIA. Ophthalmologist was unconvinced by Neuro diagnosis of “new type of migraine” and discovered engorged vessels at back of eye with 3small haemorrhages in eyeball itself.

Vision issues carried on intermittently and feelings of “wooziness”. Follow up ophthalmology app led to urgent rheumatology referral whereby bloods were done which identified weak, but positive for APS.

Advised to take low dose aspirin, return for repeat bloods in 6weeks (2weeks to go now) and follow up here end of Dec. Ophthalmology wished to see me again in 2months, but nothing till March and a locum consultant believes the eye thing is “nothing serious and just Valsalva retinopathy” probably irritated by my work as long haul airline cabin crew.

I’m very confused - has anyone else experienced issues with eyesight after or alongside APS diagnosis. The rheumatologist retrospectively suspects the NSTEMI/ACS may have been caused by sticky blood breaking up in end.

I do get migraines, but nothing like the type the neurologist suggests are just new to me. I just don’t feel “right” you know? I feel a bit off balance and odd.

Is this part of it all? Can these things be linked? Is this serious? I just don’t know?

[MaryF Administrator]

Hi and welcome, You are right to be concerned, neurological symptoms are not uncommon, and it is important to have the right specialist. We have a list of specialists in the UK, listed over on the right hand side of the forum, under 'pinned posts', if not in the UK, members of our forum often recommend who is closest to you, geographically speaking, and our charity website is here, this is undergoing some changes currently so more information in the future as our charity is growing. ghic.world/ If you look under the Hughes Syndrome/APS section you will see some information regarding neurological things.

This paper is also a good starting point for information: the-rheumatologist.org/arti...

onlinejacc.org/content/73/9...

It is not unusual to have balance problems, vertigo etc as a result of the blood being sticky, do document any progress you have on Aspirin, and do go to your GP if you have any worsening symptoms.

Also you need to check out with any consultant you see who specialises with this condition if you are flying all the time and in particular 'long haul'.

MaryF

[HollyHeski Administrator]

Hi, welcome, yes you are right to want further answers, please take Mary's advice and get a specialist in APS.

Your eyes and heart are important, and to keep your blood pressure low you need support by the medical teams.

Hopefully the aspirin will help, monitor and keep notes, as this will help when you see an APS specialist.

[Lure2]

I agree with MaryF and Hollly Heski!

Did you get a diagnose of APS when you had positive antibodies! Now you should see a Specialist of autoimmun illnesses who knows APS and works with people like us in his daily work. That is exstremely important.

I have had similar symptoms. Eye/ear/balance may be connected and can be microemboli.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She also had these issues like you and me. A good book to understand APS.

Your symptoms are APS-symptoms no doubt. Take it further!

[Tofino5]

Hi, I have vision issues that began in the last year, and I have APS. I haven't experienced the sight loss or severe vertigo - that is very frightening to go though. I had a vitreous hemorrhage in one eye, which impairs the vision in that eye, and rising glaucoma potential. I hope you get some answers and the help you need.

[emma1210]

Thank you so much for your replies everyone. I’m just now feeling actually even more confused....not because of anything here; I’ve found this information very helpful.

However, just to complicate things further, I am due to have a laparoscopy via my private healthcare for an unrelated abdominal issue, but the anaesthetist is dubious and unsure whether to go ahead in the scheduled facility as there is no crash unit there. I contacted my rheumatologist to ask her opinion regarding the diagnosis and during the conversation explained the symptoms I’ve been having more frequently since I saw her on 29th Oct. She believes the eye issues, numb thumbs and such aren’t necessarily part of APS. As my bloods had only shown the antibodies weakly there wasn’t really much she’d change even if the repeat came back showing the antibodies were still there.

I’m scheduled for lap on 12th Dec and not due for follow up with rheumatology till 27th.

To even further complicate things, I was diagnosed with “spontaneous idiopathic angioedema” - basically part of my face, usually my eyes of lips swell to look like anaphylactic shock, but with no known or pinpointed trigger. Dehydration seems to be the only thing I have overtime been able to possibly attribute this to - but I drink loads and my rheum said this is prob not part of APS. However, since the issues with my eyes started and I began daily aspirin, the swellings have started happening every few days.

Gosh, this is all so complicated and becoming very upsetting.

I turned to private care for laparoscopy as I wasn’t getting far with NHS. Nhs have been fantastic with some things but I feel like the path to answers just fizzles out and I’m just discharged with “yeah we don’t really know why it happened, keep and eye on it, you’re fine for now”.

I felt ok about going under anaesthetic, I’m now very worried and unsure if I am imagining symptoms!?! I’m not!!! I live with the exhaustion etcs everyday, but to mention it, makes me feel like a hypochondriac.

Sorry, I feel like I’ve just ranted. Thanks again for all replies

[Lure2 in reply to emma1210]

You need a Specialist of autoimmun illnesses who understands that eye-issues are often connected to APS. I think you have not yet met with that Specialist so you have better keep fighting. I can not believe your Rheumatologist knows APS, does she?

Have you read "Sticky Blood Explained" by Kay Thackray? Try to learn about APS and stay with us here.

[Lure2 in reply to Lure2]

And you are NOT a hypochondriac (!) and we learn so much to hear other persons stories!

[rankin1st]

Hi Emma, my hubby has had eye problems similar to you. acute glacoma and detached retina with vitreous fluid leaking also low postive APS, neuro issues including ataxia. (Incordinaton and poor balance). Continuous migraine. You've had good advice already, your definitely not imagining it. Get advice from Rheumy and neurology. Re flying. trust you wear flight stockings as precaution? Re angioedema I get them on face and there can be lots of causes one of which can be stress, allergy to meds (aspirin).. so talk to medical staff about what to do. Try not to fret too much (easier said than done as I am awake at 3am as worried about my hubby...) Trust yourself it's your body and trust you'll get some answers and support