Optic Nerve Atrophy ( Image Two of Th... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,337 members10,533 posts

Optic Nerve Atrophy ( Image Two of Three)

KellyInTexas profile image
KellyInTexasAdministrator
8 Replies

Please refer to Post one of one for explanation

Written by
KellyInTexas profile image
KellyInTexas
Administrator
To view profiles and participate in discussions please or .
8 Replies
KellyInTexas profile image
KellyInTexasAdministrator

A note to clarify: the pie chart ( norm. Distribution) should be totally green. Mine are completely red. Lowest 1 st percentile. Very severe problem- severe thinning. / Nerve death. Can never re - generate.

MaryF profile image
MaryFAdministrator

Thanks for putting these on, what is the plan with your haematologist, Framgin Shots? MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

I’m on 16.5 mg warfarin / 17mg warfarin every other day. Finally I hit the magic dosage about three weeks to a month ago!!!!! Yay me!

If it dips, I inject with heparin.

When I kept clotting with warfarin alone, we switched to Heparin ( exoxaparin) exclusively in hopes to stabelize the INR. I felt horrible, had almost daily migraines, and blood wouldn’t flow forth from veins for draws. The Xa factor was in the upper most high of normal limits- and sure enough I clotted with a new DVT.

I was really not suited for it and I did not like having no control. ( or let’s face it, the illusion of some control of least...I couldn’t inject- couldn’t adjust... the way I coukd with warfarin.) at this point, a mute point. My non love affair with loveonox was only 6 week.

Hughes-Comrade profile image
Hughes-Comrade in reply to KellyInTexas

KELLY, What is your approximate elevation where you live or spend most of your time?

KellyInTexas profile image
KellyInTexasAdministrator in reply to Hughes-Comrade

Kerrville, Texas- I think its around 1800 - 2000 ft. ( we are in the Texas hill country- rolling hills.) so not too high. Not a high altitude situation. Yes, I walk around clotting also. More to the story than just thinning the blood for some of us...

Hughes-Comrade profile image
Hughes-Comrade in reply to KellyInTexas

Yep, just wondered if it was an altitude issue.

Lure2 profile image
Lure2

Hi Kelly,

Hope you have an Ophthalmologist or an Eye-Doctor who really understands this. What will they do with this answer?

Can you se properly when writing and helping us here?

Kerstin

KellyInTexas profile image
KellyInTexasAdministrator in reply to Lure2

I don’t think the neuro- Opthomologist knows much, no.

I started seeing him before diagnosis. And now of course after.

He doesn’t know what to do.

Reading and writing is difficult- but then again- we all have our struggles!

You may also like...

Optic Nerve Atrophy : Image one of Three

Three petitions, which could do with a lift:

world wide ones: the last one a UK one only: It takes a minute to sign all three and please...

Sharing a Xmas image!

put into one of what goes on in our house! Salem (cat) enjoyed his presents! hubby & one of our...

Two Miscarriages and now waiting for blood tests

years. I had two miscarriages. One was a year ago at 7 weeks(twins) and one was very early days - a...

Cranial nerve blocks ( steroids injections) causing an elevated INR?

to 3.8. If it gets to 4 no panic, just adjust one mg warfarin down.) yes, I have a self test (...