Vision problems ?

[Bsharon]

Wondering if and what type of vision issues people have when INR is low / if anyone is only on aspirin ?

I have had vision problems off and on for the last month . Only being treated with aspirin and supplements at the moment .

Thanks !

[KellyInTexas Administrator]

Optic nerve atrophy-

You can see my posts on this back in the winter- three separate posts on same day with pics of three scans with explainations. Both eyes affected- clots to retinal and optic nerves. I’m in the lowest 1st percentile in most scans- which is red in color.

Yellow is 5th percentile

Normal is green- 95th percentile.

I’m 35% visually impaired of the daily living assessment score.

It affects my 3-d ability- very poor. Light to dark sshifts causes temporary blindness- so seconds- my pupils are sluggish to dilate or respond. I have pretty severe photophobia.

I can set things like a glass near the edge of a table only to be surprised that I have actually set it 1/2 on the tables edge and I/2 off- so it falls off. I’m 6” off all the time.

This causes me to constantly catch a shoulder walking through doorways, etc. run into tables. I do feel with my hands quite a bit- I’ve learned to do it discretely so I don’t look like Helen Keller. 😂

People are beginning to notice I do have some kind of problem- it’s just starting. But minor. I can’t handle the screens on credit card processors for example. The glare is a problem. The slot is a problem- all the same color... I just hand card to them and tell them I’m mildly visually impaired, if they would s mind helping me.

I have things jump around on pages when I read . I can have my vision tremble.

My far vision is quite good.

[Yllek]

I have a mild optic neuropathy which is damage caused when I was undiagnosed and having vision issues prior to starting warfarin.

My vision would go blurred and look wavy. Not all the time, it would come and go in a seemingly random pattern.

I’m pleased to say that by maintaining a high INR on warfarin my vision is ok. I have only occasionally had it return when I have a big drop in INR.

Kelly

[Ozchick]

I've just had a visit to a neuro-opthalmogist due to frequent double vision (can be anything from 30 secs to 5mins long) I told her I have APS and- Hallelujah! she knew instantly what it was and did say it can cause retinal clots. Of course, after waiting a month for this appt. and getting vision problems 3-4+ times a day it was perfect on the day and neither the doctor or the tech could replicate it. I'm getting tested for some other obscure eye problems (among them, Anti-GQ1b IgG antibody syndrome and something else I've already forgotten the name of, more to rule out than anything) I have to say she was fairly thorough even though my wait was nearly 2 hours! After I have these tests (which may take up to 3 months to get back) I go back to see her and meantime keep a record of this happening and to try different head positions to see whether it stays the same or changes. Apparently i have a slight left head tilt which may be my way of compensating for the double vision. She also asked me to take a selfie of my eyes when it happens but as I can't focus I don't know how this will turn out

Because she considered me to be appropriately anti coagulated (Xarelto + Aspirin) and retinas appeared OK on scan and slit lamp) she wasn't sure whether she was dealing with APS related or not. Problem is every time the wheels fall off some part of my body it's tempting to blame APS.

[Clairey25]

Prior to Anticoagulation and now if my INR is low, I get issues with my vision in my right eye only. It feels like a black cloud coming from behind my head and reduces my peripheral vision and sometimes I can see nothing in that eye for short periods. Is it perhaps that Aspirin is not enough Anticoagulation for you?

[Bsharon in reply to Clairey25]

I don't believe aspirin is enough for me . But here in Canada treatment and knowledge of APS is very minimal. Which is very frustrating. The Drs keep telling me it's just migraines or possibly MS . And one of the most frustrating things is the Drs fully admit they "need to read up on it " I'm hoping after I have my MRI they will be willing to let me do a trial on heparin to see .

[Maple in reply to Bsharon]

Your analysis of your experience with APS treatment in Canada is very broad.

Perhaps you just have not found the right medical team to help you.

Canada has very good APS clinician in several areas of the country

[Bsharon in reply to Maple]

I have only heard of a few specialists in Canada . I live in rural Saskatchewan where care is limited. I'd love to know where I can find a list of professionals knowledgeable in APS .

I do have a hematologist in Regina that is good but doesn't want to go to blood thinners until I've had a clotting event (this is the opinion of all the doctor's so far)

[Bsharon in reply to Bsharon]

And I also mean the care is minimal in comparison to the UK

[MaryF Administrator in reply to Bsharon]

Please take a look at our charity website: ghic.world/ You need somebody to manage your condition, there are specialists listed on there, and a good one will look in detail at your medical history, your symptoms and also test your B12, D, Iron and Thyroid also. MaryF

[Bsharon in reply to MaryF]

I've had all the tests listed above . I can never seem to find the information regarding Canadian doctor's . Is there a direct link available?

[GinaD]

I was finally diagnosed with APS in the spring of 2001, after years of what I thought were migranes and panic attacks. Nope. Strokes. But it was back in the mid ‘90s that my eye doctor did not like what he was seeing on my retina and suggested that I have an antiphospholipid test. My GP dismissed the results — literally, trashed them! — because he thought the eye doctor was “arrogant, who thinks he knows everything.” MRIsshowed a lot of damage in my visual cortex — most of it eventually healed, but I do have issues with bifocals. I can’t read very well or very fast, and when driving in an unfamiliar place — when it is crucial that I be able to read those signs up ahead on the interstate so I can emrge into the proper lane? — I can’t! The letters blur and bend leaving me in the wrong lane, for the wrong exit, for a lot of “recalculating.” (And yes, using a navigation app which gives audio directions does help.)

[ppeach in reply to GinaD]

I had a loss of vision in my left eye from retinal vein occlusion. My opthmologist ordered tests to see if I had APS and referred me to a rheumatologist specializing in APS. I was referred to retinal specialist and was given injections into the vitreus part of the eye of Avastin. Over many courses of this, my vision is almost complete in my left eye. However, I do have some depth perception issues and my right eye is healthy.