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  2. Thanks James, you rested my mind. I'm always anxious about my health since I got to know that I have PSD tough my doctor don't seem concerned as he said it's borderline.
  3. When you are travelling on anticoagulants you are in a better position than other passengers. They may have an undiagnosed risk and they have no protection at all. Whereas you have medication to protect you, and you are aware of possible symptoms, and can take additional precautions seriously. https://www.proteinsdeficiency.com/lifestyle/air-travel.php I have flown from UK to Australia on my standard dosage of Warfarin... there is no need for anything more than usual however if you a doing any long distance travel it helps if you can visit your doctor beforehand to confirm you are fit to fly. Let the doctor do their job and advise you what is best for you based on your medical history.
  4. Hi to all, I'm new here and I would like to excuse my self for my English writing as I'm from Malta. I was diagnosed with protein s deficiency after my 3rd miscarriage in 2014. They started clopidogrel 1 year ago as while I was on work my right arm got weak. They did all the test ecg,brain scan ,blood and neck ultrasound, all came back fine. My levels are Protein s activity 51 Protein is free functional 50 I'm having panic attacks and can't enjoy life as I'm always afraid that the stroke will hit me in any time, also I'm afraid of travelling which I have to do with my 13 year old daughter as she takes alot of ballet courses in UK.I asked the doctor to do the test again but he said there is no need the levels are what they are:(.
  5. Full article available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752078/
  6. As an update to my previous post we took out a joint policy with LV (Liverpool Victoria). I declared my health history and PSD and was given cover with an extra premium to pay. A ten year policy for £80k costs us £25.51 per month. This doesn’t pay off the mortgage but it ensures that after debts and funeral costs the amount left for the other person to pay would be affordable.
  7. Early Identification of Protein S K196E Mutation in a Patient With Cerebral Venous Thrombosis: A Case Report https://www.sciencedirect.com/science/article/pii/S1052305718305627 Background Mutation of protein S K196E (PS K196E) is a genetic risk factor for venous thromboembolism; however, there are few reports on cerebral venous thrombosis (CVT) with this mutation. We report a case of CVT that was diagnosed as having PS K196E mutation at the initial thrombotic event. Methods A 54-year-old man suddenly developed generalized seizures after headache and nausea. Brain magnetic resonance imaging showed cerebral edema, and angiography revealed CVT. Blood examination revealed that protein S activity was low (44%) despite normal free protein S antigen levels (81%). Sequence analysis revealed a heterozygous PS K196E mutation. We treated him with warfarin with the international normalized ratio maintained at 2.0-3.0. After 1 month, he was discharged without any neurological sequelae. Results Early identification of the causes of thrombophilia is important for the long-term management of CVT. However, detection of PS K196E mutation is difficult because its only feature is a moderate decrease in the activity of protein S, which is influenced by environmental factors. Conclusions The possibility of PS K196E mutation should be considered if other causes of CVT are ruled out and if protein S activity is decreased.
  8. Hi James and thanks again, that's what I meant, looking for alternatives to warfarin treatment that might be friendlier to contact sports, and the active life of a boy in boarding school...that's why I'd like to find second opinions towards the treatment alternatives and prevention
  9. I thought your concern was about his sporting career? Protein S Deficiency is either hereditary or acquired. Identifying the finer details of what type of PSD your son may have doesn’t change anything relating to his sports activities. Doctors will roll all causes under the blanket heading of thrombosis and treat him the same as any other person with thrombosis, so you don’t need specialists. The focus should now be on prevention and adjusting that to his lifestyle (sports activities).
  10. Thank you very much for your reply, I agree that we need to run further tests, I have contacted specialists in Italy and Spain as I discovered that they are very active in those countries regarding PSD. The clot might have taken up to two years to develop, and it was dissolved in a bit over a week, after a month there was no sign of it. We will alter the treatment during summer and will keep you posted. Also read about mutations generated by chicken pox might trigger a drop as in protein s well. Thanks for the help
  11. It is unusual for protein s deficiency to trigger a thrombosis event at his age, so there may be other risk factors. Without the familial testing to confirm the diagnosis it may help to run the screening process again. For example protein s levels are naturally reduced after a clotting event, and warfarin reduces them too, so you need to be clear of both to get a reliable natural reading. Factor V Leiden is often misdiagnosed as Protein S Deficiency. Regardless of the cause, if he has only had one clot then normal procedure is for warfarin for 3 months, then to come off anticoagulants. This would allow him to play contact sports as normal. However if he has an injury, is laid up, has a broken bone etc, then there is a higher risk of another clot unless he receives anticoagulants. A second clot would put him on anticoagulants for life. Apart from checking the screening I would suggest contacting a trade body for rugby and asking for support from their medical advisors. There may be professional players dealing with the same issue already.
  12. Hi all, I am new to this forum and trying to get to terms with a newly found protein S deficiency on my 14 year old son due to a mutation, not genetic. He has been put on warfarin and leads a "normal" life. The issue is that he is on a Rugby scholarship in one of the top schools in UK and the sport is an important part of his life. He has been looked after by a top Singaporean doctor and I still fly him to see him sporadically. Unfortunately the doctor as good as he is, is not sympathetic to contact sports. Reason why I look for answers elsewhere to explore the possibility of getting him back to the pitch. His condition was discovered because he developed a clot in the portal vein, but it looks that it took time to grow as the first indications of low haemoglobin showed up 2 years before they discovered the clot. Can anyone point me in the direction of someone that can dose him in such a way that the risks of bleeding are minimised? Anyone with this condition practices contact sports? I don't expect MMF fighters to do this but someone exposed to random injuries due to usual hits in contact sports. Any help greatly appreciated Fernando
  13. Hi all, Does anyone know if a "good" test result for coagulation times when taking Xarelto is the same as for a healthy subject? I was diagnosed with PSD and recently took the PT and PTT tests which showed much slower than average coagulation times. I am wondering if this is what is supposed to happen with an anticoagulant, or if I should still be shooting for coagulation in the "normal" range... I know this is something my hematologist should be able to tell me but I live in Mexico and don't fully trust my Dr. and I wasn't able to find an answer on line. Thanks.
  14. There is not much point in determining the type of PSD. Doctors prescribe anticoagulants to reduce the risk of thrombosis. They don’t do anything to treat the PSD. Unless you are facing a situation which significantly increases the risk of clotting it is unlikely they will prescribe anything unless you have previously suffered from thrombosis. There was no history of DVT in my family apart from myself. However my mother, sister and niece all have PSD like me. Only blood tests of family members will tell you for sure.
  15. Hi James! Thanks so much for your response. You say that it is generally more common for an anticoagulant to be prescribed only with a history of thrombosis. Is it also your sense that it is more common for one to be prescribed in the case of hereditary PSD rather than acquired or doesn't it make a difference? I will see about having my parents tested. In the mean time, is there any use in trying to determine what "type" of PSD I have? I think my Dr. only tested fuctional PS. I didn't know about the role of endolethium in Protein S production so that's a very interesting angle for me to pursue. Since there's no history of DVT in my family I'm suspecting that I have acquired PSD and will definitely look at that angle. If you happen to know of any good sources with more information on endolethium breakdown and why it happens, I'd love to know about them, meanwhile, I'm doing my own searches. For now, I've seen smoking, high blood pressure and diabetes as causes, none of which are relevant to my case...
  16. Anticoagulants are normally only prescribed if you have a history of thrombosis. Many people have low Protein S levels and do not get a clot. I do not know about microangiopathy but I can see it relates to the endolethium. The endolethium is known to play a role in production of Protein S. So maybe it is the other way around, the problem with the endolethium is causing a reduction in your Protein S levels. Family testing would probably be helpful in understanding whether anyone else in your family has low Protein S levels like yourself. If anyone does then it would indicate a hereditary cause, rather than caused by a health condition.
  17. Hi All, I recently had an MRI to rule out some other issues and was diagnosed with microangiopathy, or "small vessel disease". Apparently, these are tiny clots in the brain that cause "microbleeds" and can affect cognition over time. The usual causes of this condition are high blood pressure and/or diabetes and it is usually seen in patients over 60. I am only 48 and have neither of these conditions. (I actually have low blood pressure.) My Dr. ordered a bunch of blood tests and the only thing abnormal was a functional Protein S of 23, so I guess I have PSD. My Dr. decided that this is what must be causing the microbleeds and put me on Xarelto. I should say I have never otherwise had any thrombosis, and though my parents haven't been tested for PSD, as far as I know, thrombosis doesn't run in my family. I did a little research on my own and it seems there and mixed opinions on whether Xarelto (or any anticoagulant) is really safe for someone with small vessel disease, as while it helps with clotting, if the microbleeds continue, it could lead to serious brain hemorrhage. I've also seen very little research linking small vessel disease with PSD, even though intuitively it makes some sense. I should disclose that I'm an American living in Mexico so I don't have total confidence in the medical care I'm receiving here. I'm wondering if anyone else on the Forum has also been diagnosed with cerebral microangiopathy or small vessel disease associated with PSD, or if anyone knows anything about a link between the two. Putting that issue aside, does it make sense to be taking an anticoagulant if I've never had an episode of DVT? I'd really appreciate any thoughts or guidance on this. Thanks!
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