Hi everyone, just wondering how many of you were initially referred to a neurologist for your APS symptoms. My main one was loss of vision.

[Good4u]

In 2003 & 2006 I had head MRI,s, neurologist diagnosed silent migraine. (I never got headaches). Of course it was wrong diagnosis and was TIA's. In 2012 another head MRI showed deepened white matter lesions and silent stroke. Finally got right diagnosis & initially put on aspirin but still got loss of vision. On warfarin now for nearly 2.5 years and no problems. Just wondering how many of you had head MRI's to help get diagnosis. Has anyone else had silent stroke ? I've found my memory still impacted from this. This is the extremely short version of my journey to diagnosis which began in 1989! I've been viewed by the medical profession as a "nutcase" many many times along the way. carmen from Perth australia

[Lure2]

Hi Carmen,

I recognize very well what you write about. I had several Neurologists in the "beginning". One headache-specialist. I did not have headache but Auras and very very ligth headache. This was in 2002. MRI showed nothing but my right side was numb. It was a TIA.

Then I had hundreds of microclots during the years up to 2011 when I started warfarin and all the neurological symptoms disappeared.

First I was put on baby-Aspirin but when I get worse that was not enough. I also got loss of vision on the right eye when I was on baby-Aspirin (not after started warfarin). I have had microclots and they are invisible on MRI. The Neurologists I have found do not understand this illness so well. This was over 10 years ago........!

I still have bad memory and feel as if I am drung when I walk.

Take good care and thank you for sharing your symptoms with us.

Kerstin in Stockholm.

[Good4u]

Thank you kerstin. Very interesting you mention microclots, wasn't aware of those.

Carmen in perth

[Ablatz]

Just wondering what kind of "loss of vision" you guys had specifically. I'm still struggling to get my doctor to consider testing for APS as she is certain it's impossible for me to be diagnosed with this after I had two healthy pregnancies in the past. A few months ago I woke up with a sharp pain in my right eye and saw stars for half a minute or so. After that my eye was very sore constantly, but an optometrist said my eyes were fine. About a month ago my vision suddenly changed - not blurry or double, but It's as though I'm zoned out and can't quite look at what I'm specifically trying to see. I realize that all cases are different, and I have a host of other symptoms (mostly nerve zaps, tingling extremities, tinnitus, headaches, vertigo, exhaustion, joint pain, photophobia, heat sensitivity) but The vision is the most troubling one to me right now. Thanks!

[Lure2 in reply to Ablatz]

As I understand you have not got a diagnose. Where are you from? Look at the HSF website to find specialists in your area.

We are all different but it is the same sorts of neurological symptoms we have like those you describe above. Try to get to an APS specialist. as I think you need anticoagulation and that you probably have APS.

Hope you find an APS-specialist. Do not wait!

Best wishes from Kerstin in Stockholm .

[jenss]

Hello Good4 u,

I think I have had what you describe as silent migrane back in 2008: I had vision problems, dizziness no headache. MRI scan was fine. Neurologist described it as migraine with visual aura. It stopped occurring over the next year or so and I had two healthy pregnancies. The past 6 months or so (maybe a bit longer) I have been having headaches and dizziness and went back to neurologist. MRI scan now shows "innumerable T2 hyperintensities in subcortical regions in both hemispheres". I have no CVD risk factors. Now being tested for a range of autoimmune diseases including APS. Interesting to read to read your experience sounds pretty similar. How does a silent stroke look on the MRI? I don't feel like I have any memory loss or other problems with my brain. I see my neurologist next week to discuss recent MRI (was called in by GP a couple of days ago to discuss so I now have some time to think about questions for neurologist). Any comments/suggestions would be great. Thanksxxx.

[jenss in reply to jenss]

sorry fogot to ask what is TIA please?

[Lure2 in reply to jenss]

Please read at the HSF website. Click on the logo at the top right of this page and have a look at the info there. TIA = Transient Ischeamic Attack Print off the relevant info and show it to your GP!

TIAs or microclots do not always show up on MRI. Hope your Neurologist understands APS. We have found that Neurologists are not the best doctors to understand APS

Best wishes from Kerstin in Stockholm

[Good4u]

Hi Ablatz, firstly I had a healthy pregnancy as well so the fact you have had 2 healthy pregnancies does not discount you could possibly have APS. My vision loss would either be partial or I'd go completely blind in one eye, usually lasting 10-15 minutes. I never had any eye pain. Other neurological symptoms were numbess on one side of my body, tingling, bladder problems, vertigo, loss of balance. Basically most of what you mention. As kerstin says, you need to get checked out urgently. I wish you all the best. carmen from perth, australia

[Good4u]

Hi jenss, my MRI read" interval established infarct in the left putamen". Basically an infarct is death of brain tissue (a stroke). A silent stroke just means it's in a less "critical" area of the brain (unlike a full blown stroke which can disable or kill). Silent strokes can affect memory. I'm prone to getting lost in familiar places, lost for the right "word" at times. I agree wholeheartedly with Kerstin, neurologists don't know much about APS. My experience is they have never heard of APS. I have never had any risk factors for stroke. Slim, exercised, blood tests indicated I was picture of health. Yet despite all this I was walking time bomb as had various autoimmune antibodies which GP's and neurologists don't test for. My advice is 1. Don't rely on neurologist for diagnosis unless they fully understand APS, just as kerstin says. We speak from experience. Good luck , hope you get a diagnosis soon.

[Lure2 in reply to Good4u]

I also get lost in familiar places. Much better now when on warfarin.

Best wishes from Kerstin

[jenss]

Hello Carmen from

[jenss]

ouch that went to fast. Thanks for your reply. I have had the blood tests on Monday - testing for APS was one of them so may know more soon. I am in Melbourne Australia. Take carexxx

[GinaD]

Well, I suppose I'm the exception that proves the rule -- with neurologists that is. I too started with migraines which slowly morphed into more serious visual aura migraines which morphed into these silent, what I called, "panic attacks." I would suddenly -- in the middle of a book, a movie, a house task, on a drive -- be struck with a feeling of doom, dread and fear. As if (as my physician Father summarized it) "some part of your brain knows you are in serious danger and is trying to tell you that you are under an existential threat." "Exactly," I responded. "Just like that."

From the first migraiine to my diagnosis took about 10 years. It was an accellerating condition. In 1990 I had about 3 migraines total. By 2000 I was up to 3 - 4 panic attacks a day.

And I was seeing an opthamologist and a neurologist and they both were convinced that I had APS. In that last year before official diagnosis they would order blood work and order the results sent to my GP (who was an internist,) and then alert the GP's office to be on the look-out for those results. And the results were lost. 4 times. In a row. All results lost.

Meanwhile the neurologist ordered an MRI and there, to be seen, were dozens of these little spider webby things whch I was told was evidence of a mini stroke. The neurologist then explained to me that "the difference between a diagnosis of 'stroke,' 'mini stroke,' or 'TIA' is in the mind of the physician who is matching data with symptoms . In your case, this data is quite clear. What you call 'panic attacks,' are actually 'mini strokes.'

Eventually a bunch of high school friends who had become doctors in other states had a group phone call, arrived at a probable diagnosis, and sent me off to a hematologist in a neighboring state. I was diagnosed, put on warfarin. And have lived, mostly, happpily ever after.

A visual field test did show a hole in my visual cortex. That hole, and all those spider webby things on the MRIs have shrunk or vanished in the years since starting warfarin. Keeping the brain active and doing physical therapy exercises to help with balance have helped greatly.

And all that missing blood work? Turns out they were all positive for cardiolipin antibodies and they were all delivered to my internist's office -- though the internist said he never saw it. He had diagnosed me several years earlier with essential thrombocytosis. He was pretty sure that I still had that, but my fear at having this poorly understood disease was causing all my symptoms. In other words, I was a nut case.

But it was my neurologist, Dr John, who lead the way to my diagnosis. He spoke with my opthamologist, the out of state hematologist, and with my concerned high school friends. And he kept assuring me that they would find out what I had, and I would be treated. He never even implied that I was a nutter or making up my symptoms.

So it was my neurologist, who has since relocated to the new Cleveland Clinic branch in Florida, who got me through that last year. The exception to the rule.

[mozelle in reply to GinaD]

Hi GinaD--I'm reading your post and getting an education. I have suffered panic attacks from time to time but attributed them to problems going through my life at the time. I had lung surgery 10 years ago, and for about 6 weeks afterwards experienced them--I could be anywhere, and then all of a sudden a feeling of doom, and I would feel the walls closing in on me--Once in a store, I had to run out into the street to escape the feeling. I would never associate it with what I now found out (3 months ago) --that I have APS. Funny, I have had a history of migraines and MRI of my head by a neurologist, and many other things that have happened to me in my life which could not be diagnosed-also suffered miscarriage, and had to stay in bed with next pregnancy on and off due to bleeding. Now I wonder, could many of these things be due to APS?

[GinaD in reply to mozelle]

I have heard, from various doctos and nurses --most recently the ER doctor I saw this past summer for the hives I got after drinking our contaminated water ( did you hear about that?) --that stroke victims often hide from themselves symptom details of a stroke. Whenever I had one of these panic attacks I would stand on one foot, close my eyes and touch my finger to my nose, recite "She sells sea shells by the sea shore," very quickly, and then conclude, as I passed all of these self tests, that I was fine. Turns out, I was in all likelihood flunking these tests biut my compromised brain thought I was fine. " Which is why," the doctor concluded, " other people are often the first to notice stroke symptoms. Not the patient."

[Good4u]

Hi Gina, wow , you were very lucky or blessed to get a neurologist who knew about APS. When I went back to my neurologist for the 2nd time in 2006 I even told him then that I had APS antibodies. He still diagnosed my vision loss as silent migraine and my bladder problems as most likely an infection. I'm very happy for you that you got a proper diagnosis (albeit the hard way) and things going well. Take care... Carmen

[Good4u]

Hi jenss, I'd love to hear how you go with results on Monday. I fly to Melbourne next month to visit all the relatives. I'm hoping for some sunny weather. :). You take care to. Xxx

[Kate_clot]

Hi Carmen.

I was diagnosed with APS in 2009 following a DVT and had 6 months of warfarin treatment. In 2011 I was lucky enough to become pregnant and with the help of Asprin and Celexane had a baby girl. Other than this I had no treatment for my APS.

Last year at age 30, my neurological symptoms began. Left sided facial and arm (numbness and tingling). Brain fog and interchanging words. I have had 2 months of celexane treatment and now warfarin. Most of my symptoms have resolved, except for facial numbness on the left side. All my MRI and CT brain perfusion tests are normal. Most neurologists haven't even heard of APS. I found one who does. He thinks it's blood sludging in my brain or possibly micro clots. Has recommended Warfarin for life and ensuring I keep a healthy lifestyle. My only problem is getting my INR over 2 is proving hard and I'm taking 8.5 mg of Warfarin, the doctors are hesitant to let me take more and I am happy to risk it so I can feel my face again. It is very hard to get help, I feel like I have had to fight for my health. Find dr's who understand APS and specialise in the areas your having problems. Eg Neurologist, haematologist. Read as much as you can, if something doesn't feel right insist on help and look after yourself.

Miranda in Sydney Australia.

[Lozzer in reply to Kate_clot]

Hi Kate,

Like you I was diagnosed with APS following a DVT but about 12 years ago. I was on Warafin for a number of years but now have been on Clexane for about 3 years. You are aware that diet can have a big impact on the effectiveness of Warfarin on INR? Especially green leafed veges containing Vitamin K.

Laurie in Sydney.

[Kate_clot in reply to Lozzer]

Hi Laurie. It's great to see someone on this forum from Sydney. I'm being very consistent with my greens only having one small serve of vitamin k foods. How did you convince a DR to let you swap from warfarin to celexane? Has it worked better for you ?

[Lure2 in reply to Lozzer]

I also would like to know that.. Did the warfarin work for you (did it "kick in")? Did you have "vision loss"?

Did your symptoms disappear with Warfarin? Did they disappear or return with Clexane?

Hope you do not mind me asking because we learn from eachother on this site.

Best wishes from Kerstin in Stockholm

[Kate_clot]

Just to clarify that's one small serve of vitamin K foods daily.

[Lozzer]

Hi Kate and Kirsten.

I had some autoimmune health complications a few years ago which are associated with the APS including sudden hearing loss and haemolytic anaemia. Treatment for these was primarily steroids (Prednisone) and Imuran (Azathioprine). To keep things less complicated from point of view of drug interactions and frequent INR checks my hemo who knows APS, put me onto clexane.

I guess we have to be a little careful not to think that what has been right for one person on the forum is necessarily right for us as only our specialists should make that call. For me, the clexane has been excellent, despite the minor inconvenience of twice daily injections. No more INR tests and no interference with blood from diet or other areas. The warfarin did its job but with the common regular variations in INR.

I did have a serious episode of vision problems for a few weeks last year but that was sorted with steroid cream after a temporal artery biopsy for temporal arteritis that was negative fortunately. So vision issues haven't been one of my chronic complications to date.

I can recommend a hemo, a rheumatolgist and a neurologist all in Sydney who are experienced with APS if needed Kate.

Laurie