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  • 26 yr old has stroke from factor v lieden mutation

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    Old 02-04-2009, 08:43 AM   #1
    juliemcintyre08
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    26 yr old has stroke from factor v lieden mutation

    I am 26 yrs old with 2 children ages 6 and 4. In jJuly of 07' i was rushed to the hospital and was told the next day that I had had a massive cva with complete left sided hemi-paresis. of course the genius at the hospital didn't believe I was having a stroke so I was not given TPA.About a month later I was told that I had a gene mutation called factor v lieden mutation. Almost 2 yrs later my children, my sister and her children have all been tested, to my amazement, my children are both in the clear buty my sisters are not. As of right now I am taking 1 aspirn 325mg a day among many other medications to keep me up and running or to counter the long lasting side effects from the stroke. I am just wondering if there are any other people close to my age in the samre boat? recently my pain doctor and neurologist have been discussing putting in a spinal cord stimulator to reduce the increased pain that is caused by faulty nerve impulses. i f anyone has any suggestions or feed back I would really appreciate hearing it. I am getting frusterated with people telling me they understand when there is no way they could. maybe someone who has been in my shoes could give me some insight?

     
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    Old 02-04-2009, 06:31 PM   #2
    luvcows
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    Re: 26 yr old has stroke from factor v lieden mutation

    Julie... I am sorry to hear of your stroke. I was 42 and also had a stroke that was caused by a blood clot from my leg to the brain. I have von willebrands II so I am low on factor VIII which the hospital told me I could not be having a stroke because of the von willebrands.(even though my face drooped and I could not feel the whole left side of my body. I was too young, healthy etc..I guess you have to be older and sick to fit their criteria, so they sent me home. the next day I was worse and a smart neuro sent me for an MRI. I am on 81mg of aspirin for the past four years which has now made me anemic and I have constant bleeding gums, skin cracks and bleeding, heavy menses. Been to different drs. and they really dont know what to do. I was on Repliva for the anemia but it caused my hemoglobin to raise too high which made me extremely dizzy. I am supposed to see a hemo in NY that specializes in hemophilia because they cant thin my blood out this much yet they are afraid I will have another stroke again if i am on nothing. Good luck to you and i would like to hear if you find out what they will do for you. i will keep you posted as well...

     
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    Old 03-22-2009, 01:16 PM   #3
    juliemcintyre08
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    Re: 26 yr old has stroke from factor v lieden mutation

    Hello again!
    My newest blood tests re back and have the dotors in quite a tizzy! While my pt and ptt are at the hih end of normal range pt is 12.2 and ptt is 36.4, my INR is well BELOW normal limists at a whopping 1.08. my cholesterol is 128 combined which is awesome for me with an LDL of 83 and an HDL of 23 which yes I do know is low. i AM ALSO NOW SHOWING A LOT OF SIGNS, BLOOD WISE AND BODY WISE OF BEING ANEMIC! (as if I needed any more problems) But the big one this time is the CHD risk at 5.6! which is why the doctors are frantic to find out what the heck is going on??? Since the last time I posted I have been doing a lot od research and have found out that there is a correlation between factor V leiden and CHD in young women. however there have been many dissagreements on this subject. If anyone has any other information please let me know. thank you.... And TAKE CARE!!!!!!

    LUVCOWS

    you have just got to love the capacity of the doctors to screw up!!! have they tried putting you on warfarin? They told me that the asprin had no effect on my menses which I find hard to believe because I am on 325 mg a day and i am only 140 lbs, but my periods have been VERY heavy which is atypical for me. I take extra multi vitamns high in iron every day for the anemia and I have no clue whether or not that will work but I will have to have my levels checked again shortly so I will be sure to let you know. I wish you all the luck in the world. Please keep me posted!

    Last edited by juliemcintyre08; 03-22-2009 at 01:23 PM.

     
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    Old 03-24-2009, 10:53 AM   #4
    harka
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    Re: 26 yr old has stroke from factor v lieden mutation

    Juliemcintyre,

    Sorry to hear about your stroke. That must have been devastating. One thing that doesn't make sense is that if you had a Factor V Leiden mutation (which is the most common non-acquired predisposition to clotting) you would have trouble with VENOUS clotting as opposed to arterial clotting. Venous clots travel and get stuck in the lung UNLESS you have a "hole" in the heart where clots can bypass the lungs and go straight in to the arterial circulation and up to your brain. Did the doctors figure out where the clot came from? Did they image your legs? Did they do a bubble study to look for a "patent foramen ovale"?

    I want to make one commen about what both of you said which is a very common misconception of patients: While it is common knowledge that things like stroke or heart attacks happen in older people, most laypeople aren't familiar that these same things can happen in younger people, and are even more suprised when they hear that these things can happen in kids! HOWEVER, doctors ARE very aware that these things happen in younger people. Young patients having strokes get confused when they see the doctor is surprised seeing they're having a stroke, and it's often misinterpreted as "The doctor screwed up because he didn't recognize that young people can have strokes". This is not what happens. Emergency physicians are VERY aware that young people can have strokes, but it's still unusual so seeing it is somewhat unexpected. But there is something very important:

    When young people have strokes, it is much more likely to be from something unusual like a vasculitis, or a septic embolus or a viral encephalitis rather than from the more common clot or atheroemboli that older people get. This has HUGE implications in the treatment of the stroke in a young person because the usual things like TPA can make things a LOT worse. The doctor didn't send you home because he felt you weren't having a stroke, he sent you home because your clinical risk of going from TIA to a full-on stroke was likely low based on clinical criteria AT THE TIME. Strokes are one of the most frustrating things to treat in medicine because you really can't do anything once they've happened. Sure, there are some very select cases where thrombolysis can be given, but these cases are few and far between and the serious bleeding which happens after this is pretty scary. Additionally, not every person who is having a TIA needs to come in to hospital....what they DO need is further investigations (urgently as an outpatient) looking for a cause for the stroke. Finally twocows, you mention you have vwD II, which also makes your factor VIII low. This is definitely very complicated and does obviously warrant a trip to a subspecialist hematologist.

    WHOOOOOOOOO, that was long-winded and I apologize. I guess I wanted to just make that comment because I find that nowadays with patient advocacy (which is VERY important) one negative thing which has come out is that patients are quick to doubt their doctors and also to emphasize that doctors can be wrong. This is true, but oftentimes I've seen patients misinterpet what doctors are saying, and then assuming they're wrong. A classic example is the person going to the doctor with back pain and then coming home saying, "the doctor says nothing is wrong". No doctor would ever say to a patient with severe back pain that there is nothing wrong. What the doctor is saying is that there is no sinister explanation like a cancer or a herniated disc to explain the back pain, but the pain is still real and needs to be treated. Bottom line: doctors definitely can be wrong, but they are experts in what they do and have years of training and experience to get this knowledge. Just like doctors need to stand back and listen to their patients, patients should likewise sit back and realize that even when there is a bad outcome, it doesn't mean the doctor was necessarily wrong.

    Last edited by harka; 03-24-2009 at 10:56 AM.

     
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    Old 03-25-2009, 10:36 AM   #5
    juliemcintyre08
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    Re: 26 yr old has stroke from factor v lieden mutation

    Thank you for your comment. Yes they performed all of those tests as well as an eeg, tee and an ultrasound of my corrtid artery. however this was not done until 2 days after the stroke and they found no clot and no hole in my heart. The reason I blame the emergency room doctors is because not only did they have my patient history(because my primary psychian worked upstairs and had called in my arrival) to know that I was eligible for the TPA with minor risks of bleeding, but they also came straight out and asked my family and husband if I was faking or if they thought I was attention seeking.
    I understand that this is not a common occurence among younger people however even before I started taking classes to be a medical assistant I knew the classic signs of a stroke. loss of mobility, slurred speech, confusion, and facial drooping. I had every one of these as well as dysphasia. I am also angry with the emergency room staff for not following up immediatley with an MRI when the ct came back clear. but the worst part is that they couldn't even chart it right so I am left with no retribution on my part.
    This ER did not follow STROKE protocol by any means and I am angry because yes this happened to me, but also because what happens when another young woman goes there with the same signs and symptoms and it happens to her because no one knew to treat her better than they did me.
    As for your comments on Factor V leiden mutation....
    I do not have a DVT problem, nor have my doctors found any vienous problems. I had an Aunt who died of a clot to the brain when she was 23. The way it was explained to me and from what I have gathered through my own research is that my blood is quicker to clot, i have hetrozygous fvl so only one of the chromozones is affected therefore I am less likely to clot as fast as someone with homozygous FVL. Things like birth control and hormone replacement, smoking and high cholesterol will increase my chances of having a problem because of te FVL.
    I do not mean to sound like I know it all. God knows I don't however I have always been a firm believer of " you know you're body better than anyone else". An this just happens to be what I know about my body and my experience.

    By the way for anyone who dosen't know STROKE procedure is

    1. see a doc within 15 mins of arrival
    2. nurse prepares TPA
    3. IV inserted
    4. CT within 30 mins of arrival
    5. follow up with MRI if CT clear
    6. explain risks and benifits of TPA to patients and Family members
    7. give TPA

     
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    Old 04-06-2009, 09:07 PM   #6
    luvcows
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    Re: 26 yr old has stroke from factor v lieden mutation

    Julie...Sorry i havent been on the board in a while, good to hear from you, I understand your frustration. Cg has made some good points and I forgot to mention that I DID have a PFO which they diagnosed after the stroke. i ended up having it closed with a CardioSeal, an amazingly painless procedure that is done via catheter through the femoral artery.Because of my bleeding problem the dr. only went through one leg as opposed to the two. I did quite well and the nurse had to use a sandbag and put pressure on the incision on my leg for a half hour, but there were no complications, thank God. the PFO was diagnosed by my cardiologist who used a TEE. It was defenitely worth it. The hemo I recently went to said that I probably have a form of lupus that is not ANA positive yet because I have the butterfly rash (classic) plus fatigue and achy joints and this wierd blood disorder of both clotting and bleeding. He said that oddly enough actually is what balances everything out. hope you are feeling better and that the dr. gets to the bottom of it.

     
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    Old 04-06-2009, 09:17 PM   #7
    luvcows
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    Re: 26 yr old has stroke from factor v lieden mutation

    Julie I also have anemia. i take iron supplements when i have my period.this seems to have helped.Also take the iron (under dr. supervision of course) with orange juice or vit. c never with calcium supplements! And certainly not with morning coffee!! Check online for iron rich foods. I did improve. It all is so difficult at times because we are young for this, and you are younger than me so it must be harder because the disorder is invisible you dont look sick. i actually had a friend say to me that I should just try to get back to work i would feel better (I took care of livestock at my previous job)...Oh yes I replied why didnt I think of that?

     
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    Old 04-07-2009, 03:45 AM   #8
    harka
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    Re: 26 yr old has stroke from factor v lieden mutation

    Quote:
    Originally Posted by luvcows View Post
    Julie...Sorry i havent been on the board in a while, good to hear from you, I understand your frustration. Cg has made some good points and I forgot to mention that I DID have a PFO which they diagnosed after the stroke. i ended up having it closed with a CardioSeal, an amazingly painless procedure that is done via catheter through the femoral artery.Because of my bleeding problem the dr. only went through one leg as opposed to the two. I did quite well and the nurse had to use a sandbag and put pressure on the incision on my leg for a half hour, but there were no complications, thank God. the PFO was diagnosed by my cardiologist who used a TEE. It was defenitely worth it. The hemo I recently went to said that I probably have a form of lupus that is not ANA positive yet because I have the butterfly rash (classic) plus fatigue and achy joints and this wierd blood disorder of both clotting and bleeding. He said that oddly enough actually is what balances everything out. hope you are feeling better and that the dr. gets to the bottom of it.
    Hey luvcows, did they use a term called "antiphospholipid antibody syndrome" with you at all? ANA negative lupus is very rare. Antiphospholipid antibody syndrome is something though that can occur with or without lupus.

     
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    Old 04-07-2009, 05:41 AM   #9
    juliemcintyre08
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    Cool Re: 26 yr old has stroke from factor v lieden mutation

    LUVCOWS


    Sorry but I haven't laughed that hard in a while! Why don't people get it? My GodI would gladly go back to work providing I could! I'm sure you would too! Wow! That has got to be absolutley infuriating for you, I am so sorry, I have lost friends because of comments like that and unfortunately my inability to hold my temper when it comes to my stroke. However I would have to say that I think that the ones who treat you like an invalid are 100 timesworse than th ones who see nothing wrong with you. I have a girlfriend that I go to school withand as I'm sure youknow after dealing with my kids all day between school and normsl everyday house stuff not to mention my husband bought a puppy!by 6pm I am ready for a nap but on Mondays and wensdays i'm headed off to 4 hrs of school so I am utterly exhausted which means the storkes effects show like a big flashing vegas sign!!! so every class she's asking if I need her to carry my books, running to get papers from the front of the room for me like I can't stand up or something. Some people would say this is just sympathy but I see it as utterly annoying! I'm DISABLED not an invalid!!It drives my insane!!!!! But like I said I fdo get annoyed sometimes at people who see nothing wrong and expect me to be sll fine and dandy. Foe instance 2 weekends ago my husbands friends band was playing at a bar around the corner from us and sall of the guys were bugging for me to come watch so I said I would. After about an hour and 1 drink later I was so ready to go home.. but I stayed. Then they got on my case cause they were buying shots for every one and I wasn't drinking them. Which means I had to explain to hem that I can't. Which asgain meand they're looking at me trying to find some deformity or something, like because i'm not the typical poster child for perfectly healthy I should have an extra head growing out of my butt or something! So yeah it gets hard but Thank God I have a very invasive but supportive family to help out and listen when I crab. An I have even gotten most of them to stop sqying they "understand" still no news about the cumadin or the chd risk though so I will keep you informed and in my prayers!

    hope to talk to you soon

    Hang in there

    Last edited by moderator2; 04-07-2009 at 06:52 AM. Reason: please do not post your email address in the public forums - instead, use the private messaging system

     
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    Old 04-07-2009, 08:36 PM   #10
    luvcows
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    Re: 26 yr old has stroke from factor v lieden mutation

    Cg...As a matter of fact yes I do have APS. The hemo said that the von willebrands II actually helps it by naturally thinning the blood. they had originally put me on Plavix and in 24 hours I was bleeding from my nose mouth ears and fingertips. yuck.now im on 85mg of aspirin and i take iron to help counteract the anemia i get from the aspirin. the rheumatologist suggested plaquenil to help with the exhaustion and to thin the blood. When I read the side effects...hairloss,bluish tint to the skin and possible loss of vision. With my luck i will wake up bald, blind and blue!

     
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    Old 04-07-2009, 09:57 PM   #11
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    Re: 26 yr old has stroke from factor v lieden mutation

    Quote:
    Originally Posted by luvcows View Post
    Cg...As a matter of fact yes I do have APS. The hemo said that the von willebrands II actually helps it by naturally thinning the blood. they had originally put me on Plavix and in 24 hours I was bleeding from my nose mouth ears and fingertips. yuck.now im on 85mg of aspirin and i take iron to help counteract the anemia i get from the aspirin. the rheumatologist suggested plaquenil to help with the exhaustion and to thin the blood. When I read the side effects...hairloss,bluish tint to the skin and possible loss of vision. With my luck i will wake up bald, blind and blue!
    Yeah, doesn't sound like it's too appealing eh?

     
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    Old 05-09-2009, 04:38 PM   #12
    juliemcintyre08
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    Re: 26 yr old has stroke from factor v lieden mutation

    Busy busy busy, things are so hectic, I just wanted to do a quick check in to say yes I am alive. A lot is new, trying something different. so I will continue to check in here. thanks so much! talk to you again soon

    Last edited by moderator2; 05-09-2009 at 05:48 PM. Reason: posted disallowed website(s) - please read the posting rules

     
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