My specialty Hematologist said I am continuing to have strokes to the optic nerves.
The tiny vessels which supply blood to the optic nerves ( both eyes) , are clotting. ( my INR dips - I can’t keep it stable. I’m taking 17 mg every other day now and 16.5 the others with a target INR of 3.8-4.2
This damage happens quickly. I ( personally...) believe if you have balance problems- this is likely due to spinal nerve damage- and there could be possible a correlation. My heme tells me this is what is happening to me, so why would it not possibly happen to others? So little is know, actually. I encourage you to print off my test results, tell your doctor you also have balance problems, neurological involvement, and maybe should get a base line of thickness of optic nerves. I showed problems on tests before I myself experienced visual impairments by a few years. ( 4?) . My 3-d ability is gone, peripheral vision is greatly reduced, and I just feel very strange in the world. If I’m still it’s better. In the world in motion, when the brain / eyes have to process many things in unison , I have far more trouble. I am technically considered a low vision patient, although my vision is 20/20. I’m over 35% loss/ impaired.
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KellyInTexas
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HI, are you prescribed any Heparin/Fragmin shots for when your INR dips? Also be aware the balance problems are also at times due to micro clotting in your ears also. The blood vessels in that area are tiny, so some react with tinnitus and balance problems. MaryF
Yes. I had a neuro- otoligist - she also a surgeon- run tests on ears/ etc. she had never had an APS patient. She determined a problem with central brain processing center- much like with eyes. She wasn’t sure about clotting.
( I did suffer vertigo but Heparin/ warfarin/ higher INR resolvedvthatvso I think that was due to micro clots in tiny capillaries in inner ear.)
Sorry for delayed two part answer, yes, I am prescribed Fragmin for times when INR is too low. ( the trouble is I can - not always- vary greatly in value fro vein to finger prick reads.
I understand you have problem if the difference is not the same between the vein-test and the fingerprick-test when you are on a special INR.
My INR is always higher in the fingerprick-test and if my INR is very high the difference between the two are bigger but always the same with a discrepence of 0,2 - 0,3 perhaps, if you compare the same high INR both times that is.
I take my machine with me to the hospital- so 5 min apart. Some days a discrepancy of 0.2, other days a discrepancy of 0.8!
I always test new strip batches that arrive.
And yes, finger prick values are the higher value.
I give up! 😉
Oh, and my numbers don’t seem to matter if they are in the higher ranges or not to have the discrepancy. You’ve told me that before, so I’ve been on the look out for that trend, and so far that’s not been the case with me- but I probably haven’t been tracking it long enough to tell for sure.
I wonder if you did read Kay Thackrays first book "Sticky Blood Explained". I had those fenomens very exactly like her. I had problem with balance, ears (leftsided otolit-damage) tinnitus (still have it today all the time and hearing aids but does not bother me much).
The best Professor we have in Sweden on balance-issues said that I had micro-emboli and should start Warfarin. I have today noticed that my doublevision return when on an INR around 3.5. I also in the beginning had problems when people moved around me. On a high INR of 4.0 I do not have any symptoms at all only tinnitus and Auras (without headache) Auras only from time to time.
Thank you for taking the trouble to put this up for us! Thank you Kelly!
When I first joined forum, you recommended the book. I bought it of course! I do not have double vision exactly. The problem is mine is still continuing. Even on warfarin.
It is difficult to explain with my limited English.
Zig-Zag-patterns after a dot in the centre of the vision with no sight. Takes about 5-10 minutes to clear up totally (for me that is). Some get headaches afterwards but I have never got headache. I have had is so many times, even now sometimes but much more seldom after my Warfarin treatment with an INR of 4.0.
Hi Kerstin. I get exactly the same thing with my eyes. Never both at the same time and never headaches. I've had these auras for 36 years and I don't pay attention to them anymore. Thank you! Now I know the terminology! Cheers Holly
Kelly does this mean you will eventually go blind? I have had issues with my eyes lately. Some times they go completely blurry and I cannot see anything on our large screen TV. I suffer from dry eye apparently and in fact many years ago I was told I had arthritic eyes. My balance has been seriously off even with the B12 shots, it has been like this for the past 1.5 years and the doctor just shrugs his shoulders. For years I would sometimes get a feeling of "whisker burn" on one side of my face. It was always too painful to touch but there was nothing noticeable on my face. Then I would get a weakness or heaviness in my arms which would make me be sluggish. All the doctors I have ever seen in the years since I was 29 have insisted I have rheumatoid arthritis until they run all of the tests and come back shaking their heads. Osteoarthritis but unclear about the types I have. Apparently I have a couple of them mixed together. I have had two major clotting issues and swear that 6 months ago I had some sort of stroke or something at my job. I almost fell over and my heart felt like it was hitting my ribs as it beat. Each beat hurt like the dickens then my vision went on me for awhile. Never had anything like this ever and afterward I was so tired I almost fell down. I told the cardiologist about it and he just nodded and said nothing else. So I do get symptoms of something quite often but how do you tell if they belong to an illness like Hughes or if they are just a "nothing important" category? So darn confusing that I sometimes feel I should not be part of this group because you all seem to know what is what. You know what I mean?
I have forgotten if you have got a Specialist and if you have had a diagnose on symptoms or on antibodies or both?
I do not know if you have read the book "Sticky Blood Explained" by Kay Thackray and read on the pinned posts here. Kay Thackray had many neurological symptoms and we are all individuals.
But an AURA I talk of is first a blind spot in the centre and a couple of minutes afterwards there is the zigzac pattern that get wider and finally just disappear. Some people (like my uncle) had afterwards a terrible headache. I have not. It does not happen so often but what i can understand it has nothing to do with the INR, but as you know we are all different. Before Warfarin the Auras were more common but i think it can have to do also with stress etc.
If you get these different neurological symptoms you never forget them and then if you even can read that others have the same you want to tell other APS-sufferers about it as maybe they also understand what is really going on with them. It is common to think that we are crazy which we are not!
I suppose you are on anticoagulation for your symptoms!
What you describe can be silent migraine- my normal Opthomologist said this can also happen. I’m not sure. But what you describe is not what I experience. Mine is not anything sudden. I did have the sudden thing that with silent migraine. That’s is a classic aura, what you describe.
I am on absolutely nothing. He didn't give me anything and neither has my doctor. I am completely alone on this since no one seems to be very concerned like I am of course. I said to them it is my body that may have a stroke or heart attack and I could DIE! oops did I sound like an hysterical woman?I get so sick and tired at being dismissed as a person who gets excited because she is trying to be proactive about her own care. Now don't get me get wrong I do not yell or get aggressive but I do stand my ground when I dont understand something. So my doctor knows nothing about my condition and has sent me out to try to find a specialist and when I do he will make the request for me to see them. So now it is up to me.
My neuro Opthomologist said if we can’t stop the process of nerves dying I will continue to loose my vision . It is not fast, but even the smallest of loss makes a huge impact to patent on patient because nerves are so thin to begin with.
Going blind in most cases is a process . I’ve already started this process. Im close to 40% impaired, but in depends on the situation. It’s not “ black or white “definition. I had no idea it was so complicated, either! It’s not a straight forward question, nor Is There A straight forward answer, because it involves the brain as well as the eyes. The optic nerves deliver the images to the brain. They are the cables that carry the data from eyes to brain.
What I actually get is a small wiggle in the middle of my eyes then it becomes clearer forming a string that wiggles and gets bigger. When it is big enough it looks like my eyes start to fill with rippling water and covers my whole vision. I can see through it but it is not clear. It finally dissipates with the whole process lasting an hour or so. When it started years ago no one knew what it was but it happened at the same time I had some kind of heart issue happening. They told me I had mitral valve prolapse. Many years later I was told it was A symptomatic migraine but I have never been tested if there is a test.
I wonder if you have tried to find a Doctor who is an Expert of our illness? We have talked about that before.
I have forgotten how much anticoagulation you are on at present but I think you need help with your illness as probably you still have neurological symptoms and perhaps need a stronger anticoagulation to fix that.
I had a specialist but only saw him once. They said I missed a couple of appts. but I had no idea I even had an appt. So he got rid of me. I am on no medication for Hughes. No one will give me anything untill I find a specialist. I know that right now I am going through a rough patch and what I meant by that my whole body is off. I can feel it and it is affecting everything. Usually this type of thing will pass after a few days but I am into my second week already. I don't like feeling sick cause I am a fighter but this has got me pretty low.
My point is that’s I’m trying to make- is , it’s an easy test. If any one thinks they are having nerve damage, or micro emboli issues- especially balance problems perhaps also- it’s perhaps wise to check for optic Nerve Atrophy. Also called aptic Nerve Neuropathy.
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