How many strokes have you had due to APS?

[SoulRebel-APS]

Im just wondering if there is an average number of strokes APS patient's have. I have had literally 100's of TIA's and CVA's. However, I had two wholes in my heart, and ASD & PFO, that where facilitating strokes and it took YEARS to get a diagnosis and then almost another year to find a dr. That could close the wholes in my heart. Please keep in mind that I, like many of u, have very little short term memory left so if I have asked before plz forgive me. Thank you for your time anf thought.

[Lure2]

We suggested that you should try to find an APS-Specialist in the US (New Mexico) 15 days ago.

That is so very important that we have such a Doctor who really knows how it is too have this sticky blood and who also can give you the right treatment. If you are on Warfarin you must be at INR-no that is high enough so you get rid of your micro-strokes or TIAs I think you have.

As i do not have those symptoms any more after Warfarin at around an INR of 3.8

[Lure2 in reply to Lure2]

it must be something wrong with me or my computer ..... it went away. Sorry,

I had almost finished anyway. Please try to find an APS-Doctor and an INR high enough to get rid of those symptoms you have. Read also "Sticky Blood Explained" by Kay Thackray. Very good book for us with APS.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

I was also going to tell you that before I started Warfarin I had hundreds or thousands of micro-embolies or TIAs. It took several years before I started Warfarin and perhaps I had "symptoms of duobleseeing or vertigo" once or twice every day.

Kerstin

[SoulRebel-APS in reply to Lure2]

Thats the same way it happedned with me u thought maybe it was due to the holes in the heart facilitating so many. Are you, or others that u know with APS no disabled. I am. And even thought I take my meds try my best to keep inr above 3 but am unstable so I still have strokes! Sine Sept. 23rd I have had 3 strokes where I lost use of one side or the other of my body. Last inr was 3.1 got to get it up higher. From all the stokes my vision is degrading, I am much weaker then I used to be, my mind wonders and I have a very hard time with short term memory as well as tryinh to learn something new. I can be walking and suddenly a leg, or both will give out and I fall. I also have neurological pain throughout my body. I have been haveing severe pain in my hips for a few years now I can get severe pain in my hip that seems to run deep, thru the bone some times just to my kneebother times all the way to my ankle, weird part is, us thatbit usually starts in the middle of the night whan im sleeping. I put a heating pad one as much of the area as I can but it hurt really really bad. My PC has no interest in looking into it. We did some exrays when it started but it is now very frequent and it major pain. U aware of what this could be? Im afraid it could be infarcts in the bone.

[Lure2]

Your story is like so many others. The Doctors do not understand and especially in the US they do not know that so many of us (most of us with APS) need to keep an INR over 3.5 to get rid of the symptoms (also pain).

The second important thing is that we just have to get an Expert who is willing to let you get higher and if possible selftest. Many of us now try the oral anticoagulants but they are only allowed for those with an INR between 2.0 - 3.0. If I should take something else than Warfarin I should probably have to take LMW Heparin. Today when I am under an INR of 3.0 I have to take a Fragminshot.

We have too sticky blood that is the problem. I also have Pulmonary Hypertension and two leaking heartvalves because, I believe, of all my tiny microembolies during the years without anticoagulation. They discover them when it is too late (the PEs).

So I am sorry to say but you have to look for an APS-Specialist because as you say your Dr does not care and most certainly he does not understand either. Doctors do not like not to understand their patients. This is a very rare illness "discovered" by Prof Hughes in 1983 and we have learnt here that people with APS in the USA have great trouble to find a Specialist.

Some of us also have other autoimmun illnesses and a Rheumatologist specialized in APS, know that SLE, Sjögrens and even thyroidea illnesses are "cousins". You have to have control of your bloodpressure and see to it that you get enough D-vitamin, Iron, B12, and the whole thyroidea-panel. What therapeutic level of INR are you put on?

Often when we have an operation our symptoms get worse if we are not anticoagulated. That happened to me when I was operated for Hyperparathyroidosis and I had only Baby-Aspirin.

Good Luck! Hope you will find your Specialist but do not wait. Read that book also.

Kerstin

[Lure2 in reply to Lure2]

Also as APsnotFab suggested; when you get that Doctor who understands ask him about Plaquenil. When you get the right treatment you will feel much better I am sure. Never more stop Warfarin without other anticoagulation. (You say you were taken off Warfarin for 3 days).

Kerstin

[MaryF Administrator]

I have never had a stroke, but I believe I had a bad TIA or two, and I have a history of pretty serious clots. However currently ok, and finally in my later years more recently have passed two out of the standard tests a few times now. MaryF

[Hughes-Comrade]

With that many tia's maybe you are a failure with current blood thinner meds. Possibly discuss with doctor about trying a different thinner maybe a trial with shots.

[GinaD]

MRIs after my diagnosis showed dozens of white things that looked like spider webs in my brain. I was told they were from strike damage. But the good news is, after year on blood thinners and physical therapy to help restore my balance, a subsequent MRI showed only one spider web left.

[SoulRebel-APS in reply to GinaD]

Thats good the damage isn't normaly fixable. I had an MRI where the radiologist said eveything was fine nothin wrong. My dr called cause she wanted to know id the infarcts really did clear up. Unfortunately they had not. I just had a bad radiologist reading it the first time. Hope yours are better and continue getting better.

[GinaD]

All those strokes were from 2000-2001. I had 1 more (known subjectively -- no testing) when I was experimenting with a lower and lower INR to satisfy docs who suspect I do NOT in fact, have APS. You see -- when I went gluten free in 2004 all my positive blood work turned negative. AND, all that positive blood work has been "lost." (?????) (Its a soap opera worthy story. Really.)

But that 1 TIA did establish that I can go pretty low on my INR before I get symptoms -- the TIA showed up when my INR was down to .7. So, never again. Back on warfarin for life. And if I lose my perscription, I'll learn to grow curarie in my basement and self medicate that way. Those TIA strokes are (as you know) s-c-a-r-y! I don't EVER want to have one again.)

[snorkle272]

Hi. I had my first stroke at age 35, but I didn't know it. The next two full strokes were when I was 47. Again, i didn't realize they were strokes. Hundreds of TIAs. These are what finally led to my Hughes diagnosis. My upper right carotid artery was 90% blocked and my left 30%. I had right side endarterectomy and graft within 2 months of the diagnosis. The 30% occluded artery disapeared, and no one can tell me why. Because it wasn't the warfarin unblocking it.