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  • PLEASE HELP I'M 20 AND HAVE LOTS OF STROKES

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    Old 12-20-2000, 11:08 PM   #1
    LisaWh
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    Exclamation PLEASE HELP I'M 20 AND HAVE LOTS OF STROKES

    I'm 20 years old and I have been having STROKES since I was 15. I have been on so many drugs and had so many tests and my Dr. can't tell me what is wrong wih me. I am now happily married with one child, and my husband needs help understanding that these strokes are lifelong for me and that I can't change that. During my last Big stroke (in August 2000)I lost a lot of my memory, and my Dr. saw a new large area of brain damage. From this large stoke I can't remember some things and my husband is always making fun of it, and sometimes gets mad because I can't remember what he might have said last week. I don't know what is causing my strokes or what to do about it. Things are really tuff around here financially because I can't work. And I am always having to take the blame for that because I can't go out there and work. I am stuck in a tuff spot with my medical problems dating back 5 years, and not knowing what is causing this. I have done so much and some times I feel like just giving up. Maybe someone can give me some feedback or support as to what I might be able to do.

     
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    Old 12-21-2000, 02:05 PM   #2
    cheliqua
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    I'm curious... did they ever test you for any blood clotting disorders such as Factor V Leiden, lupus coag, etc.?
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    Old 12-21-2000, 08:29 PM   #3
    LisaWh
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    Cheliqua, my Dr. has done so many test and as far as he knows I have no blood clotting disordes. I was on various blood thinners for about 2 1/2 years and they didn't seem to change anything. I am taking a medicine now called 'plavix'(for heart attacks and strokes) and that doesn't even seem to work. I don't know, I have been on almost every single drug out there for this problem and none of them seem to help. Do you have some info. that I might need to know about?

     
    Old 12-22-2000, 06:31 PM   #4
    cheliqua
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    I am on coumadin. And so far, it has worked for me, and I'll be on it for life. I have heard of another drug called Ticlid. Any thoughts on that one? I hate to hear that they cannot find the source. Keep plugging on! One day they'll find it!!
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    Old 12-23-2000, 12:28 AM   #5
    Moon
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    I am sorry to hear of your situation. My mother had a mini stroke and she lost all short term memory for a while. It was extremly difficult for her to deal with it. And very difficult for the poeple around her to deal with it too. I hope your spouse has learned that making the situation more stressful for you will not be of any help.

    I hesitate to suggest anything. But you may want to look into the use of Niacin, (vitamin B3) in larger doses around 1000mg a day. This is used by people that have high cholesterol as a means of reducing the cholesterol in the blood and in a way behaving like some type of crud buster for the blood. Also, eating walnuts (one hand full a day) might be something you might want to check out. I understand that walnuts contain an acid that will help dissolve the particles that accumulate on the inside of the blood vessels.

    The niacin will make you flush, you will feel tingly and hot after you take 500mg in the morning and 500mg in the night. This will be less noticeable if an aspirin is taken about 30 minutes before taking niacin. (you should be careful with aspirin and the niacin if you are on any type of blood thinning medication)

    Please don't consider this as any medical advice, and consult your doctor before making any changes in your medical strategy.

    Good luck

     
    Old 12-27-2000, 09:54 AM   #6
    John Gary
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    Lisa I've had three strokes in the 13 years between the age of 32 and 45. I'm now 47 and take Ticlid probably for the remainder of my life. The third stroke was not the worst by far but left me with a greater disability than the first two from which I recovered fully. I've been studied and tested, tested some more and restudied. I've had several spinal taps, been tested for MS. I even had a brain biopsy. In the end no one knows what was or iz the cause. My neurologist treated me for things known to cause stoke. Stop smoking, I did; ten years later I had my second stroke. Stop drinking I did; 18 month later I had my third stroke. What did I do next... I changed Neurologists. My present Dr. believes that a deficiency of Folic Acid and Complex B vitamins affect homocystine (an amino acid which affects the bloods ablility to make and break clots). So by his direction I take Ticlid and Stress Tabs, an over the counter vitamin high in Folic Acid and all B vitamins. This summer begins my third year without a reoccurance. I still don't smoke nor drink anything more than beer in moderation. I walk abnormally, but I can walk unassisted. A gift for which I am grateful because I was and still try very hard to be a a very active man; although I do at times have to ask for help from wife and family. My typing is slow and I backspace a lot to correct the errors from my left hand. My daughter, a Deaf child who types flawlessly and really fast, mimicks my typing when using the TDD phone device. I ignore her. Some people make fun of me, stare at me, I ignore them. There will always be those who make fun of others less fortunate than them. I'm sorry you seem to be married to one. My advice to you is "Don't let the *******s get you down." and Don't ever stop trying to improve. Tell your husband to stop giving you a hard time and start sharing some of his strength to help each of you cope with the lot you have been given. After all "THAT IS" what marriage is all about

     
    Old 12-28-2000, 08:06 AM   #7
    charla
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    I am 37 and at the age of 30 had two strokes, I understand what you are going thru. They never found out why I had my strokes, at the time I was an aerobic insturctor teaching 13 classes a week, no high blood pressure, did not smoke, no history of anything, I have had every test that they offer and then some! seven years later I am stoke free but still have no explanation as to what happened. I thank God that I was able to recover and pray this does not happen again, my question to you is since you had these strokes, when you had your child did they do anything special due to the fact that you had prior strokes? I am hoping to have a child in the next year and one of the issues I am dealing with is do I go on a blood thinner or not, I do not take anything right now ..

     
    Old 12-30-2000, 05:34 AM   #8
    Pooky
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    I think I will have to take coumadin for the rest of my life. I hate taking it because they have to check my blood once a week. As far as having no money, you should try to get SSI. They have finally started giving me a check. I hope that I don't have any more strokes. I had my first one when I was only 22. My stroke also left me with a memory problem. However, my memory is getting better, now

    ------------------
    I had my stroke on September 8, 1999
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    I had a hemorrhagic stroke on September 8, 1999.

     
    Old 12-30-2000, 09:14 AM   #9
    LESLIE_IN_PGH
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    hello lisa!!

    i have had a series of small strokes, i'm 33 and this has been going on for almost three years...MAKE SURE THAT YOUR DOCTORS HAVE CHECKED ALL (AND I MEAN ALL) OF YOUR CLOTTING FACTORS....I HAVE JUST REALIZED MINE HAS NOT CHECKED ME FOR A HEREDITARY CLOTTING DISORDER CALLED 'ACTIVATED PROTEIN C RESISTANCE'...AND I AM ABOUT TO BE CHECKED FOR THIS...I HAVE A FEELING IT IS GOING TO BE MY ANSWER...I HAVE AN AUNT THAT HAS TIA'S AS WELL AND MY GRANDMOTHER HAD HER FIRST HEART ATTACK AT 40 YEARS OLD AND HER FIRST STROKE AT 43....DON'T GIVE UP...,STAY INFORMED AND PUSH YOUR DOCTORS A LITTLE WHEN YOU HAVE TO!!!

    BEST OF LUCK! LESLIE

    ------------------

     
    Old 12-30-2000, 09:37 AM   #10
    LESLIE_IN_PGH
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    Quote:
    Originally posted by cheliqua:
    I'm curious... did they ever test you for any blood clotting disorders such as Factor V Leiden, lupus coag, etc.?

    HELLO, CHELIQUA!
    I'M CURIOUS WHAT KIND OF DOCTOR FINALLY FOUND YOUR CLOTTING DISORDER?
    LESLIE IN PITTSBURGH



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    Old 12-31-2000, 07:55 AM   #11
    cheliqua
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    My internist found it! After we realized that I was not suffering from asthma, but from PE's, he tested me and that's when we found out I was positive. I am now also followed closely by a hematologist and a high risk OB/GYN. Just for my info, we got a second opinion at the Mayo Clinic. They told me the exact same thing that Vanderbilt has been saying all along. Factor V Leiden was the only thing I tested positive for. The docs are a little baffled by all the events I have had, but I'm doing better. Coumadin is the way to go for me.
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    Old 01-15-2001, 09:25 PM   #12
    LisaWh
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    I can't thank all of you who responded to my topic enough! I have made another appointment with my Dr. to go over all the possible causes to my problem. When I asked him about some of the other possibilites that might be causing this to happen to me, he went quite, like he didn't know what to say. My Dr. was really shocked about what I had come up with. He has agreed to run some more tests on me, and now maybe I will have an answer. And Pooky, thanks for the financial tip on getting SSI, I went to my local SSI office and filed a claim. My husband has lightened up a little bit after reading what John Gary had to say, THANKS John Gary for the impact you have made on our marriage!! I will keep you all informed as to what my Dr. says about all these new ideas. I hope you all will stay healthy & Thank You for your help and support with this matter!!! Lisa

     
    Old 01-16-2001, 03:08 PM   #13
    asgmatrix1
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    Hi again,

    The other association that might be good for you to contact is the American Stroke Association. The first one that I sent was the American Stroke Foundation.

    The American Stroke Association can be reached at:
    [url="http://www.strokeassociation.org"]http://www.strokeassociation.org[/url]

    Again, I hope these two associations can lead you in the right direction. Possibly even to cardiovascular specialists that may be at least able to stop the strokes from re-occurring.

    I'll say a special prayer for you.

    ------------------
    Angelo Gambino

     
    Old 06-18-2001, 10:59 AM   #14
    joygrotjohn98
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    Lisa - did you have any problems with your pregnancy? I had a stroke recently and am considering getting pregnant again, but worry about the risks. Did you have a stroke while pregnant? or shortly thereafter? I hope all is well with you.

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    Old 06-18-2001, 11:22 PM   #15
    LisaWh
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    Quote:
    Originally posted by joygrotjohn98:
    Lisa - did you have any problems with your pregnancy? I had a stroke recently and am considering getting pregnant again, but worry about the risks. Did you have a stroke while pregnant? or shortly thereafter? I hope all is well with you.
    Hello joygrotjohn98,
    Yes I had a few problems with my pregnancy. I started having strokes when I was 15 years old. I also had a few of them while being pregnant. My Dr. always classified my pregnancy as being a high risk pregnancy, because of that possible risk of stroke. My son was very lucky to not have sustained any side affects from my strokes while pregnant. I even had some more strokes after he was born. I also had preclampsia while pregnant, and then got put on bedrest at 6 1/2 months pregnant, till the end. Deliver was great though. I was still very weak but I had no complications with delivery. My son was born as healthy as they can be. My body handled the delivery and after delivery very well my DR. said. My son is now 2 and has been examined a few times by my neurologist for any possible lins to strokes or seizures with his brain. My DR. said that he is a healthy 2 year old and does not see any concerns or atributing factors that would indicate he will or has had any neurological problems. I wish you the best of luck with your decisions and please make sure to check with your DR. for any possible risks that might be involved for you. Keep me posted as to what happens and if you need any more help please let me know.

     
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