I just read a post about APS causing vision problems. I wanted to ask you guys a question about my own vision problems. In 2006 I was diagnosed with a slight Exotrphia in my right eye. It is a condition where one eye does not track properly with the other eye. It is supposedly caused my one eye having bad long distance vision, and the other eye having normal long distance vision. Apparently one blurry picture is mixed in with a clear picture, as both pictures from each eye are melded together inside the occipital lobe in order to create one single three dimensional picture. Since one picture is blurry, the brain tends to ignore the input from the bad eye. If this was the case, I would not have stereoscopic (Three-D) vision; but I do. My uncorrected eyesight in my right eye is 20/100 and my left eye has normal vision. The Ophthalmologist kept on asking me if I ever had any mechanical trauma to the eye of which I have never had any eye injuries that I know of. I also didn't have any vision problems when I was younger. Do you guys think this loss of vision could have been caused my APS? Also, I have been getting a lot of problems with blurred vision lately. Sometimes I have to shake my head, or squint my eye a few times to get my vision to come back into focus. I don't know if this is APS related or if it is related to my diabetes.
One other weird thing that I would like to throw out there is my inability to keep my car straight when I an driving on the freeway. I actually had to stop driving commercially (I used to drive a semi truck) because I would weave on the road kind of like a drunk. I never got into an accident, I was actually a good driver, but I felt unsafe because of it. That was way before I started wearing glasses. I don't know if any of you guys have ever taken an eye test on a Stereoscopic viewer. It's an electronic machine that you look into and read the different lines that they ask you to read. There is an entire set of letters on the left side, in my left eye's line of sight that I can't even see. They kept asking me to read off the letters and I was like "what letters?" As it turns out, if I close my right eye "the bad eye" the missing lines/letters would then show up in my left eye's line of sight. I could only see them if my right eye was closed "which you aren't supposed to do" but I didn't tell them what I did; so I passed the test. It just kind of freaked me out. Any how, I'm sorry for the long post, any advice would be greatly appreciated.
The only APS specialist near me is 100 miles away Kerstin. It would be very difficult for me to travel there unless I were to rent a car. There are so many questions I have that most of my current doctors can't answer. I'm going to post another question about possible thyroid problems for MaryF sometime later on in the day today, or tomorrow. For the past three days I've been extremely lethargic. I go through these bouts a few times a year where I just want to sleep for a few days. I don't even have the energy to read an email at times. Then things go back to normal. I'm also having a lot of chest pain but don't know if I want to go to ER or not. My INR was 2.5 two weeks ago, and it usually never goes lower than that, so I shouldn't be throwing any clots. I hate not being able to see what my body is doing on the inside. I have had my INR above 3.0 a few times and I never noticed a difference. But then again, I might just be so used to feeling bad that I don't really recognize the difference. I have to get another eye examination soon. That will let me know if any changes have occurred since my last exam in 2010. Thanks for the links Mary. I will go through all of them later on today. I got my latest bout of lethargy right after I typed out this question to you guys. I'm so glad to have this site. You guys have really helped me out a lot. Hugs!
I am sorry to say it again but i Think you must try to find someone who understands what it is to have APS. My MRIs have always been clear. I have microembolies and they do not show up on MRI I have been told.
3.0 in INR may be too low to feel any difference. The doctors do not understand that we have too thick blood and I believe that some of us need a higher INR than others. I feel OK when I am around 3.5 - 4.0 in INR. This is a new illness (only 20 years) so the Specialists also learn new things through listening to us.
Try to read as much as you can about APS. Then it is easier to put the right question to the Specialist and to understand your own behavior and symptoms.
Good luck in finding that APS-Specialist. It is a fight actually to have this rare autoimmune illness.
I too had a clean MRI. I have been having some weird stuff happen today. The ringing in one ear was pulsating today and I could feel the blood pumping in my neck. I used to get that all of the time when I was working out in the sun. Have you ever felt the blood pumping in your head. You're right about the higher INR. My current doc will not go higher than 3.0. I need to eventually consult with a specialist. I notice that even with a high INR, when I prick my fingertips to check my blood glucose level, the blood comes out in one huge red blob of gob. It looks like motor oil. Any how, thanks for the advice Kerstin!
in reply to
I'm sorry, I meant to say I felt and heard the blood pumping in my neck; the sides of my neck. I also had the ringing in my ear start and stop as my heart was pumping today. It did that in my right ear for about an hour then stopped. I have experienced this many times in the past.
You are perhaps a little different as you also have diabetes (my eldest daughter has type 1 diabetes) and that can perhaps affect you.
I felt the heartbeat in my eyes from time to time and could also se a vertical line from the heartbeat. That was before warfarin. I could not hear it I think. But I have had tinnitus since 2002 when I had the TIAs and that never goes away. I do not mind because I am so used to it and nothing happens.
I know a person with APS here in Stockholm (the only one I know with APS) who took her family and went to London to see Prof Hughes.
I Think you can make an own referrel and take your papers with the bloodsamples with you. As I am from Sweden I do not know exactly how you do that rreferral in England. It is easier here I think.
Some people go to London Bridge as the waiting list is shorter there. I hope you do it.
Wouldn't it be wonderful if Dr. Hughes could do video conference exams/consultations for those of us who are living in other countries. That would be wonderful. Although I'd love to visit England, I don't like flying, especially now when my bad leg is in constant pain. I have found an APS specialist here in California, he is just a hundred miles from me. I might call his office and see if I can get an appointment with him some time in the future.
sirclotsalot, meet herclotsalot!! I have the same issues , I have factor 5 Leiden which is an inherited gene not acquired like APS but because I keep throwing pulmonary embol insitu (never have had a dvt) I take 10mg of Arixtra sub q daily. I have small vessel disease and atherosclerosis. Wish you well
Liz, I also have the Factor II (2) Mutation. It's a relative of Factor V. I'm one of the lucky 2% of the population to have it along with APS. I also have possible Protein S deficiency. My protein S level was 24. But they can't confirm it because I'm on Warfarin. It's crazy all of these different clotting disorders. I think I have thrown some lung clots without DVT before. I just never knew what was happening. There have been times when I have passed out and hit the floor when I was younger. I just attributed it to heat stroke or what not. I once almost passed out and fell backwards while at work and another worker had to catch me. I can usually put up with a lot of stuff and just brush it off. It's getting harder to do that as I get older.
I'm so sorry for my late reply by months. I have become totally bedridden. I've been working very hard at getting my mind in the "right place". I read a response that your going to California, I'm from NY but went to USC in 1995 for help with my diagnosis. Yours sounds as complicated as mine and I've prayed for you to get all the answers you need and treatment.
Be careful of flying on trips above 18,000 ft.
I learned the hard way on a trip from Dallas to Rochester NY and threw a massive PE. They had to land in Cleveland to get me to the hospital. As you mentioned, I've had this all my life but now in my 50s I've become more aware and less carefree with my choices. Now having multiple organ lupus and cross over along with the factor 5 I'm learning my living area is smaller, but I've made my smaller space more beautiful.
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