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Diagnosed after a stroke?

Guest sahra

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Guest sahra

Has anyone else been diagnosed following a stroke? How old were you? How old are you now? Have you had any more strokes? Do you panic every time you get a severe headache? Still nervous I guess. Thanks in advance for any comments.

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Guest lassesen

My wife had a series of TIA (4 in one week) before she started treatment. Since then she has not had any. In her case we found two infections associated with Hughes Syndrome (PCR testing) -- H. Pylori and EBV. The first one was eliminated using the standard antibiotic treatment for it. The EBV is still being treated.

Additionally, she is on grape seed extract (same as aspirin but without the bleeding risk), and many other non-prescription anticoagulants. Her fibrinogen level is usually running hgh, but tumeric and piracetam has been very effective in bringing it done.

With regular (every 6 months-12 months) monitoring of ALL of her coagulation factors with appropriate supplements or prescriptions -- we do not expect any more TIAs or strokes.

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  • 1 month later...
Guest freda

Hi I had a stroke last year(may 23rd) was 49 at the time. However I also had a heart attack when I was in my 30's and they never could tell me why. No I did not use street drugs! I was sent to a Specialist and he ordered blood tests. That's how I found out that I had PSD. I had been sent home with Plavix, but after having an MRA they found that I had clotted in my left caroted artery in just a few months!!!. I was put on wafafin at that time. August. My doctor has told me that I could not have another stroke. I was asleep when my stroke happened so I guess I can be thankful. I woke up uable to use my right hand. I have about 98% use of it now and am very lucky!!!

hope all is well with you and that you are able to enjoy your life

I am very grateful


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Guest Nibarian

In 1988, my then 8 year-old son had a stroke. He had had a really bad flu and couldn't even keep down water. We learned (after the fact) that he must have had the stroke when he became dehydrated. After a week at our local hospital, he was flown by helicopter to Children's Hospital Los Angeles. They did an angiogram on one side of his groin, and it clotted off. They did another on the other side and that clotted off too. We were told that he was given every diagnostic test available, and finally, almost 8 weeks later, he was diagnosed with PSD. Luckily, besides the PSD, he didn't have any signs of paralysis or memory loss.

My husband and I were tested and found out that I had it also, although I had never had any problems at all. My parents were tested and my father had it. He had never had any problems either, but his brother had severe vericous veins and my grandfather died of a DVT in 1960. My younger son (then 6) was tested too, and he also tested positive. We were told that it was VERY rare, and that we were only the second family on the west coast to be diagnosed (the other family was also a CHLA family)

He was started on heparin, but has been on coumadin ever since. When he was 12, he twisted his knee playing basketball. The knee healed, but he developed a clot in his calf. Back on heparin for a while, then back on coumadin again.

Christmas 1999 he started having seizures and was diagnosed with epilepsy stemming from the damage from the stroke all those years back. In the spring of 2000 he developed edema in his ankles and stasis ulcers appeared on both ankles. He's now 23 years old and the ulcers have still not healed and they have also developed between two of his toes. Right now he is on coumadin (5-6 mg alternating, INR 2-3) for the PSD, Trileptal for the epilepsy, and is on an antibiotic and Vioxx for the ulcers.

We have finally been referred to the Dermatology Dept at UCLA, and have an appointment in late May. We are very worried about the ulcers, but are excited about finally getting to UCLA for treatment.

If this all sounds familiar, I did post on the old site a long time ago. Had to re-register today. Must have forgotten my sign-on and password.

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  • 1 year later...


I wasn't diagnosed after my three TIA'S. I did, and sometimes still do, have very serious miagraines. They told me that TIA's leads up to a big stroke. I do get a little worried but time with the PSD and educating myself on any and all links to PSD has helped. I was 25 on my first TIA, and I am 29 now. What is your experience?


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