Lady^
08-02-2002, 10:05 AM
Just wondering if anyone else has this and how/if it has affected their lives.
Sponsor
mamasemail
09-05-2003, 03:58 PM
Hello: I have recently been diagnosed with Factor 5 Leiden, and would like to correspond with someone else who have this disease. I'm 62 years old, and it just came about now! I'm on coumadin 4 mg once a day.
Thanks.
Thanks.
bettybygosh
09-15-2003, 12:08 PM
hi newbie, iam am an old timer at this, you have been diagnosed with factor v leiden, ? how are you doing? what happened to you and how did you get diagnosed now? is your coumidine helping you? any questions just drop me aline, thats what we all are here for. bette
trainwreck
10-18-2003, 09:18 AM
Hi. I too have Factor V Leiden Mutation, diagnosed 18 months ago but suspected it 2 years ago after being hospitalized for a DVT that was unbeknownst to me prior. I suspected it because it is genetic and my nephew has it and my sister obviously is a carrier. I was on Coumadin for 6 months following the DVT and then off for about a year until April of this year. It's an annoyance due to the fact that we have yet to stabilize my Coumadin dose, so I have blood draws weekly.
Brad King
11-25-2003, 06:20 PM
Hi all,
Just found out I have it, too. Good news is we can treat it. Bad news is I found out after discovering I had CRVO (central vein retinal occlusion). That is a nasty bugger that makes you lose part or all of your eyesight in the affected eye. No treatment although some folks do recover totally. Drag. Anyway, if you are clotty like us, you have a higher chance of getting CRVO. It's basically a stroke in the eye.
So, if you have it, don't blow it off. Go see your doctor and don't ever let yourself get dehydrated.
Have a happy holiday season...Cheers.
Just found out I have it, too. Good news is we can treat it. Bad news is I found out after discovering I had CRVO (central vein retinal occlusion). That is a nasty bugger that makes you lose part or all of your eyesight in the affected eye. No treatment although some folks do recover totally. Drag. Anyway, if you are clotty like us, you have a higher chance of getting CRVO. It's basically a stroke in the eye.
So, if you have it, don't blow it off. Go see your doctor and don't ever let yourself get dehydrated.
Have a happy holiday season...Cheers.
jojo64
12-30-2003, 01:31 PM
I have it too........was diagnosed after multiple miscarriages. I am not being treated for it as my hemo doesn't think it's necessary. Anyone else have this but is not being specifically treated?
JenJones1072
01-04-2004, 04:06 PM
Hi!
I found out in Feb 2003 that i have factor 5 leiden after being in the hospital for a pulmonary embolism! I have been on coumadin since and get monthly blood draws. I went off the coumadin for a few months and to make a short story shorter, I develped a blood clot and had to go into the hospital again on Dec. 30th. This time really scared me. I'm only 31 Y.O. and just got married! I want kids, but am scared that might not be possible now with everything that is going on. (was diagnosed with Diabetes also...makes it even harder) My husband is supportive and says he will go with anything i decide as long as i follow the doctors' directions.
I found out in Feb 2003 that i have factor 5 leiden after being in the hospital for a pulmonary embolism! I have been on coumadin since and get monthly blood draws. I went off the coumadin for a few months and to make a short story shorter, I develped a blood clot and had to go into the hospital again on Dec. 30th. This time really scared me. I'm only 31 Y.O. and just got married! I want kids, but am scared that might not be possible now with everything that is going on. (was diagnosed with Diabetes also...makes it even harder) My husband is supportive and says he will go with anything i decide as long as i follow the doctors' directions.
jojo64
01-05-2004, 12:48 PM
Jen, I am also diabetic. I am sorry about your clots and I understand about you being afraid to have kids. I ended up getting my tubes tied because I kept having miscarriages :(
AngelicBrat
01-09-2004, 02:17 AM
Hello Lady and everyone!
My best friend was recently diagnosed with Factor V Leiden after losing sight in one eye. She ended up having Optic Neuritis that quickly turned into retinitis and then into a series of clots. The eye surgeon has never come out and said retinal vein occlusion, but that is my suspicion. He ended up doing 3 surgeries on her eye to try and clear her eye but it ended up leaving her with irreversible damage and loss of vision due to scar tissue. She still has NOT seen a Hematologist where we live, so she still hasnt started on warfarin for her clotting problem. She has Type 1 Diabetes on top of this so the dangers are increased. We are trying to get her into a Hematologist in another city but wait lists are long and all that fun stuff.
I have Antiphospholipid Syndrome (APS), a blood clotting disorder that lives in the same "family" as Factor V. My blood is considered like syrup, sort of like sticky blood. I have lost my eyesight because of this. I have double and blurred vision and my acuity is very bad. These doctors are unsure whether or not I will lose my vision forever. I have Lupus on top of it all too! My friend and I make quite a pair. I suppose we have to "stick" together!! no pun intended. Anyway- just wanted to say that we are going through the same journey!!
~Angelic
My best friend was recently diagnosed with Factor V Leiden after losing sight in one eye. She ended up having Optic Neuritis that quickly turned into retinitis and then into a series of clots. The eye surgeon has never come out and said retinal vein occlusion, but that is my suspicion. He ended up doing 3 surgeries on her eye to try and clear her eye but it ended up leaving her with irreversible damage and loss of vision due to scar tissue. She still has NOT seen a Hematologist where we live, so she still hasnt started on warfarin for her clotting problem. She has Type 1 Diabetes on top of this so the dangers are increased. We are trying to get her into a Hematologist in another city but wait lists are long and all that fun stuff.
I have Antiphospholipid Syndrome (APS), a blood clotting disorder that lives in the same "family" as Factor V. My blood is considered like syrup, sort of like sticky blood. I have lost my eyesight because of this. I have double and blurred vision and my acuity is very bad. These doctors are unsure whether or not I will lose my vision forever. I have Lupus on top of it all too! My friend and I make quite a pair. I suppose we have to "stick" together!! no pun intended. Anyway- just wanted to say that we are going through the same journey!!
~Angelic
vandevrede
11-03-2004, 02:27 PM
I was diagnosed with Leiden Factor V four years ago at the age of 50. This was about 2 months following a heart attack. At the age of 38 I had a vein stripped from my leg due to a blood clot that would not disolve. It turned out to be a clot approximately 3" long. I currently take 11 1/2 mg of Coumadin daily. I also suffer from migraines that are hard to control and my options for meds to take after I get one are limited. Does anyone else have this problem?
Auzzie_wan
11-19-2004, 10:17 PM
hi all I too have FVL I was diagnosed a few years back after having pulmonary embolism's both lungs were 70% full of clots ...I have a question for those of you that have had PE's ...my Dr's told me my lungs would be clear after about yrs and I wouldn't be still puffed ...well its almost yrs sense I had my PE's and I still get as puffed now as I did when I had 70% of both lungs full of clots ...I even get puffed just rolling over in bed ...is this the norm ? I was told I would be on warfarin for the rest of my life tho I am no longer on it and haven't had any other prob's from FVL ..I was on 12 mg approx of warfarin ..and was having bloods done approx 3 times a week ...I was on a first name basis with my pathologist lol ...It was really draining getting bloods done all the time and I felt like I spent more time at the pathologist then anywhere else ...I have had 5 children out of those 5 I have 3 living children ...3 of my children were born prem because of pre eclampsia and my kidneys were not far from shut down either ..my first and 3rd born were both girls both were 13weeks early ,my first lived for 8 weeks and my 3rd child lived for 1 week ....my second child a boy who was my only non emergency C/section has a rare chromosomal disorder called ring 22 ...my 4th child a girl was a emergency C/section at 38 weeks after being in and out of hospital all of the preg on my final admission my kidneys and blood pressure were both really bad so I was taken for a C/section then and there ...Baby number 5 was born at 32 weeks 8 weeks early is a boy hes now 7 yrs and struggling at school tho he had no real dramas in NICU I think his prob's date back to his prematurity ..OK this is way off track now lol ...but had I known when I had my children about FVL I am sure the outcome would never have been so grim ,but there was no test for FVL when I was having babies ...I asked for a hysterectomy when I was on warfarin as my periods were awful there was days each month when I couldn't leave the house because the bleeding was so bad nothing would stem the flow ,instead of a hysterectomy the Dr's offered me a placenta ablation and the lining of my womb was burn off by lasers in my case it was very successful ..after about 3 months from bleeding badly my periods went to nothing ...I just wanted you all to know that while FVL isn't a nice disorder to have it is possible with the right care to have children and a close to normal life ...of all my family tested for FVL my dad ,sister and my youngest son have FVL Di
Ttremayne
08-25-2005, 01:18 PM
Dear Angelic,
Does your doctor think that double vision is a trait of Factor 5? I get regular ocurrings of double vision and I have Factor 5. I think it is because of the brain shrinkage or the building of the fluid around my cranium. My neurologist doesn't seem to concur on this. Would you let me know what your doctor thinks? Have you heard of anyone else having double vision with the Leiden Factor gene? I was diagnosed with the gene five years ago, but I have been having double vision spells for 25 years. I have had every brain test there is to find out about the double vision, and the doctors cannot tell me what is causing this. I would sure appreciate any input you might have.
Thank you,
CAN ANYONE OUT THERE HELP ME? EMAIL ME AT [ please read and follow the posting rules - no emails ] Teresa T.
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
Does your doctor think that double vision is a trait of Factor 5? I get regular ocurrings of double vision and I have Factor 5. I think it is because of the brain shrinkage or the building of the fluid around my cranium. My neurologist doesn't seem to concur on this. Would you let me know what your doctor thinks? Have you heard of anyone else having double vision with the Leiden Factor gene? I was diagnosed with the gene five years ago, but I have been having double vision spells for 25 years. I have had every brain test there is to find out about the double vision, and the doctors cannot tell me what is causing this. I would sure appreciate any input you might have.
Thank you,
CAN ANYONE OUT THERE HELP ME? EMAIL ME AT [ please read and follow the posting rules - no emails ] Teresa T.
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
Ttremayne
08-30-2005, 10:23 AM
Does anyone have Leiden Factor V and experiencing double vision with it?
HaveNoLuck78
08-31-2005, 02:52 AM
You're very welcome. I have found that their mailing list and resource/question list to be extremely helpful to me...I just wanted to share a place of knowledge with everyone else.
schnookie
09-01-2005, 07:55 PM
Thank Goodness I found this thread! Thanks ahead of time for any help or advice.
How do I get my husband to UNDERSTAND the importance of being tested? His mom and sister have LVF. We found out his Mom had this after she ended up in hospital w/blood clots. His sister ran out and got tested next day and has it too. I explained he should do this since we have children and they need him healthy, and he should be grateful because a lot of ppl don't have the *luxury* of knowing this is a possible problem for them until it's too late. I was told dr won't test my kids unless parent tests positive first. I almost had there. We were 2hrs from his appt and in one ph call his mom blew it by saying "I don't think you need to get tested. There's nothing they can do abt this anyway. Your sister gets hysterical." He's very healthy, 50, and has no other medical problems. I even tried to get him there under te guise of him needing a physical, his first in ten years. He was willing to do that before all this happened, but now, no dice. It's easier getting my dog to the Vet!! lol So now what? David Bloom was in the news about a month prior to this; now he just *angry* when I bring it up.(and he's not an angry person--just when someone ?'s his mother) Any suggestions of info would be appreciated!
How do I get my husband to UNDERSTAND the importance of being tested? His mom and sister have LVF. We found out his Mom had this after she ended up in hospital w/blood clots. His sister ran out and got tested next day and has it too. I explained he should do this since we have children and they need him healthy, and he should be grateful because a lot of ppl don't have the *luxury* of knowing this is a possible problem for them until it's too late. I was told dr won't test my kids unless parent tests positive first. I almost had there. We were 2hrs from his appt and in one ph call his mom blew it by saying "I don't think you need to get tested. There's nothing they can do abt this anyway. Your sister gets hysterical." He's very healthy, 50, and has no other medical problems. I even tried to get him there under te guise of him needing a physical, his first in ten years. He was willing to do that before all this happened, but now, no dice. It's easier getting my dog to the Vet!! lol So now what? David Bloom was in the news about a month prior to this; now he just *angry* when I bring it up.(and he's not an angry person--just when someone ?'s his mother) Any suggestions of info would be appreciated!
Ttremayne
09-02-2005, 12:02 PM
:bouncing: I don't know how to tell you how to get your husband to go for the tests, except that, if he does not, and has the gene, he is succeptable to blod clots and mini strokes.
analog2000
09-02-2005, 04:55 PM
Why doesn't he want to be tested? It is just a simple blood test. Nothing more than a quick blood draw. Even if he has the trait, if he is not currently having any symptoms, it is unlikely that he will need any treatment right now.
The value of the test is that if there are problems down the road, his doctor will be able to give him better care then. I have the trait, and my brother and parents were all tested a few years ago. I figure that it never hurts to have the knowledge, even if you aren't planning on using it right now.
Good luck.
The value of the test is that if there are problems down the road, his doctor will be able to give him better care then. I have the trait, and my brother and parents were all tested a few years ago. I figure that it never hurts to have the knowledge, even if you aren't planning on using it right now.
Good luck.
analog2000
09-02-2005, 05:05 PM
Ttremayne -
Does your doctor think the FVL trait and double vision are related? I do not see any reason why the Factor V Leiden trait would cause double vision. Consider that the trait simply makes you more likely to develop blood clots. For blood clots to result in double vision you would actually have to have a clot or infarction in your eye(s), brain, etc. If that were the case, surely it would have been diagnosed sometime in the last 25 years?
Is it possible that the two things have nothing to do with one another? Are you worried that at some time in the past you might have had a clot that resulted in permanent damage (i.e. - the double vision)? If so, I don't think there would be anything to do about it after all this time.
HaveNoLuck78 - Thank you for the website - it is really wonderful.
Good Luck Everyone!
Does your doctor think the FVL trait and double vision are related? I do not see any reason why the Factor V Leiden trait would cause double vision. Consider that the trait simply makes you more likely to develop blood clots. For blood clots to result in double vision you would actually have to have a clot or infarction in your eye(s), brain, etc. If that were the case, surely it would have been diagnosed sometime in the last 25 years?
Is it possible that the two things have nothing to do with one another? Are you worried that at some time in the past you might have had a clot that resulted in permanent damage (i.e. - the double vision)? If so, I don't think there would be anything to do about it after all this time.
HaveNoLuck78 - Thank you for the website - it is really wonderful.
Good Luck Everyone!
laurel1952
04-22-2008, 09:45 PM
I was diagnosed as being a carrier of factor 5, my daughter wants to get bc pills and they will not put her on them until she has the test. Does anyone know what being a carrier means. My nephew had a blood clot in his lung and that is how we found out about this. My sister and i are both carriers.