I JUST HOPE I DONT HAVE A HEART ATTACK CAUSE I CANT TAKE ANY OF THE MEDS THEY WANT 2 GIVE ME 4 MY HIGH TRY EVERYONE REACTS DIFFRENT 2 THIS APS IS WHAT IVE LEARNED I HAVE A GREAT TEAM OF DOCS
@musteyhey I'm sorry that you have been through so much because of the APS. It sounds like lupus in the way that it affects everyone differently. I didn't know I had i when I was pregnant 23 years ago. I was on bed rest from 5 months on. Got severe preeclampsia. I lost 60 lbs of water in 3 days after he was born. Then wham it was back overnight. Horrible. The water was squeezing all of my muscles and I couldn't move. When I was in labor they thought I was going to stroke out.
I HAVE THIS I AM 43 HAD A STROKE AT 38 I HAD 2 CHILDREN PREMATURE LABOR WITH BOTH BED REST FOR AT LEAST 3 MONTHS MY FIRST WAS BORN WITH A MAJOR BRAIN DEFECT AND DIED AT 5 YEARS OLD MY SECOND IS FINE HES 14 THEY BUT ME ON BLODD THINNERS AS SOON AS THEY REALIZED WHAT I HAD CAUSE I WAS SLURRING AND AND LIGHT HEADED SO THATS WHY THEY STARTED TESTING MY BLOOD AND THEN FOUND APS I HAVE SEIZURES ON OCCASION AND I ALSO HAVE VERY HIGH TRYGLCERIDES WHICH THE HEMO DOC SAYS IS BECAUSE OF MY APS
I was just diagnosed with APS last month. In the past I've had miscarriages, mini-strokes, paralysis (my neurologist just said I must've slept on my arm wrong), blindness in my left eye that never cleared completely, a swollen leg the ER nurse said was just from the heat...I could go on & on. I also have fibro, but I guess my APS is primary. My new dr tool me off ms-contin & put me on dilaudid, then roxicodone. He won't give me morphine, said its not the right treatment. I don't understand, are
I was diagnosed a year ago with APS. I also had 2 miscarriages before finding out...possibly 3. My hemotologist put me on 325mg. of aspirin everyday, and I'm hoping that's enough. I don't believe I've ever had a clot, and I'm hoping I never develop one! Any advice about treatment, other than aspirin?
@MrsChibi1977 I'm so sorry it has taken me so long to write back. Please accept my apology. My doctor had me on baby aspirin and that was it. If I began to have clots, strokes, etc. she said they would put me on Coumadin. I am so thankful it never came to that. After the stem cell transplant I know longer have APS! So I no longer take the baby aspirin.
I have lupus anticoagulant. It started with a blood clot in my leg. Was in hospital 8 days. Lovenox shots im my tummy and coumadin. I left hospital with a coumadin, but i got more clots so now I have to take lovenox shots in my tummy and a autoimmune drug cyclosporine, I have had to have 2 pints of blood when my blood was too thin. I have been in and out hospitals many times.
Your video is very good. You speak from experience. My prayers are with you. Lord bless thee.
@lovestimhawkins You have really had a time with this. Mine has been kept under good control with baby aspirin. Thank you for all your kind words. You definitely will be in my prayers. Take care and please keep watching. If you have any questions please ask or if you have something to teach that would be wonderful too.
I have lupus and had a DVT, was checked for APS and yes, I have it. I'm taking coumadin to ward off clots; weekly, I used to go to the anticoagulation clinic to have my blood checked and get dosed for the next week's coumadin. The doc felt that I was a good candidate to monitor my INR at home, so now I've got the same machine and the company ships me supplies as I run low. Insurance covered it.
actually they have a new machine that tells you in just a couple of minutes. now I only have my finger poked which is so much better that having it drawn.
@scarletfire28 I guess that technology hasn't made it to small town Oklahoma yet. My dad has to go to the hospital every Monday and they draw blood. Then they call back in the late afternoon with the results. Last week it was to thin and he was having nosebleeds. Hopefully it is going to be ok next Monday.
I have APS and lupus and I had mini strokes for 2 years before I had my stroke. 15 years ago it is a pain in my ass I have been on coumadin for 15 years and ugh I always have to have my blood checked but if I keep it checked it is somewhat under control. I hope you feel better soon. Michelle
@scarletfire28 My dad and brother are both on coumadin and like clock work every monday morning they go get their blood checked waiting for a call that afternoon. That has to be a thorn in your side. I am on baby aspirin other than when I am in the hospital and I get the shot in the belly each day. I wish they could find a different way to handle this so it wasn't so difficult for those of you who have to get your blood checked all the time.
how are you feeling today like you i an soooooo fatigued i just want to lay down and die lol you have to laugh or you will cry do you have any family support and what meds are you on have you got a good family doctor i am lucky my husband and daughter care for me i have 2 other daughters one lives in london and the other lives in dorset i thank GOD for computors i would have no life without mine i also have short term memory and problems with recall look after yourself rest up ok
@taffytown1 I do have an excellent support system. My husband is my primary caregiver and I have a 21 year old son who does an excellent job of helping me out. My med list is enormous. My husband makes sure I take the correct meds and doses. With the cognitive fog I was forgetting to take meds or even worse forgetting I took them and then taking them again. I am like you i love the computer. I hope to hear from you more.
Hi i used to take so much medication i decided that if i don't feel any better with it i will stop it so now i only take life saving medication and very strong pain meds lol I live in Wales inbetween where Tom Jomes and Anthony Hopkins were born sorry no tallent touched me or mine lol my husband is the chairman of our local Carers Group and a Director with the Carers Service he had to give up work to look after me 15 years ago and got involed with carers rights take care ok bye
Post Viral Syndrome is also know as M.E or Chronic Fatigue it is very debilitating i can be in bed sleeping for up to 17 hours a day and still very very tired it's like a sleeping sickness there is no blood test for it just a certain criteria have you got Fibromyalgia that makes you soooo tired and week and it causes a lot of pain Have you tried reflexology or hypnosis or healing i have found this to be very good at times Keep in touch Regard's Geraldine
@taffytown1 I do also have fibromyalgia along with the SLE. Right now I am going through extreme fatigue. I am having to force myself to get up and eat. I can barely hold my eyes open right now. In the past I have tried accupuncture and manipulations and did not have any progress with it.
Hi i t took 17 years for me to be dx with this disease i saw Dr G Hughes at his London clinic i also have sjogren's Lupus i am 54 and asprin did not work for me i am on warfarin i have had multiple tia's and post viral syndrome life is a bitch lol keep on fighting i also became ill after the birth of my third child
@taffytown1 What is post viral syndrome? I also wonder if now they check for this when they do the blood work up on pregnant women. It would be so simple just to add this to the list since they are already drawing the blood. 17 years is a long time to search for a diagnosis. How are you since you have been diagnosed?
Thank you for the info on APS Foundation of America. I looked at the site today and learned alot more about APS. Again, thank you for leading me to the site so I can learn more about the condition. Hopefully, others will see this also.
I JUST HOPE I DONT HAVE A HEART ATTACK CAUSE I CANT TAKE ANY OF THE MEDS THEY WANT 2 GIVE ME 4 MY HIGH TRY EVERYONE REACTS DIFFRENT 2 THIS APS IS WHAT IVE LEARNED I HAVE A GREAT TEAM OF DOCS
musteyhey 3 months ago
@musteyhey I'm sorry that you have been through so much because of the APS. It sounds like lupus in the way that it affects everyone differently. I didn't know I had i when I was pregnant 23 years ago. I was on bed rest from 5 months on. Got severe preeclampsia. I lost 60 lbs of water in 3 days after he was born. Then wham it was back overnight. Horrible. The water was squeezing all of my muscles and I couldn't move. When I was in labor they thought I was going to stroke out.
treappling1 3 months ago
@musteyhey just do what your doctors say and everything will work out for the best. Keep the faith.
treappling1 3 months ago
I HAVE THIS I AM 43 HAD A STROKE AT 38 I HAD 2 CHILDREN PREMATURE LABOR WITH BOTH BED REST FOR AT LEAST 3 MONTHS MY FIRST WAS BORN WITH A MAJOR BRAIN DEFECT AND DIED AT 5 YEARS OLD MY SECOND IS FINE HES 14 THEY BUT ME ON BLODD THINNERS AS SOON AS THEY REALIZED WHAT I HAD CAUSE I WAS SLURRING AND AND LIGHT HEADED SO THATS WHY THEY STARTED TESTING MY BLOOD AND THEN FOUND APS I HAVE SEIZURES ON OCCASION AND I ALSO HAVE VERY HIGH TRYGLCERIDES WHICH THE HEMO DOC SAYS IS BECAUSE OF MY APS
musteyhey 3 months ago
I was just diagnosed with APS last month. In the past I've had miscarriages, mini-strokes, paralysis (my neurologist just said I must've slept on my arm wrong), blindness in my left eye that never cleared completely, a swollen leg the ER nurse said was just from the heat...I could go on & on. I also have fibro, but I guess my APS is primary. My new dr tool me off ms-contin & put me on dilaudid, then roxicodone. He won't give me morphine, said its not the right treatment. I don't understand, are
cyn37211 4 months ago
@cyn37211 I didn't get all of your message that ended with your question. It cut off somehow. Please rewrite me. :)
treappling1 3 months ago
I was diagnosed a year ago with APS. I also had 2 miscarriages before finding out...possibly 3. My hemotologist put me on 325mg. of aspirin everyday, and I'm hoping that's enough. I don't believe I've ever had a clot, and I'm hoping I never develop one! Any advice about treatment, other than aspirin?
MrsChibi1977 7 months ago
@MrsChibi1977 I'm so sorry it has taken me so long to write back. Please accept my apology. My doctor had me on baby aspirin and that was it. If I began to have clots, strokes, etc. she said they would put me on Coumadin. I am so thankful it never came to that. After the stem cell transplant I know longer have APS! So I no longer take the baby aspirin.
treappling1 3 months ago
I have lupus anticoagulant. It started with a blood clot in my leg. Was in hospital 8 days. Lovenox shots im my tummy and coumadin. I left hospital with a coumadin, but i got more clots so now I have to take lovenox shots in my tummy and a autoimmune drug cyclosporine, I have had to have 2 pints of blood when my blood was too thin. I have been in and out hospitals many times.
Your video is very good. You speak from experience. My prayers are with you. Lord bless thee.
lovestimhawkins 1 year ago
@lovestimhawkins You have really had a time with this. Mine has been kept under good control with baby aspirin. Thank you for all your kind words. You definitely will be in my prayers. Take care and please keep watching. If you have any questions please ask or if you have something to teach that would be wonderful too.
treappling1 1 year ago
I have lupus and had a DVT, was checked for APS and yes, I have it. I'm taking coumadin to ward off clots; weekly, I used to go to the anticoagulation clinic to have my blood checked and get dosed for the next week's coumadin. The doc felt that I was a good candidate to monitor my INR at home, so now I've got the same machine and the company ships me supplies as I run low. Insurance covered it.
teamrn 1 year ago
@teamrn I wonder if Medicare covers it?
treappling1 1 year ago
yes I hope it is ok for him next week. and I am so sorry for him and your brother, coumadin is annoying to say the least. xxoxoxox michelle
scarletfire28 1 year ago
actually they have a new machine that tells you in just a couple of minutes. now I only have my finger poked which is so much better that having it drawn.
scarletfire28 1 year ago
@scarletfire28 I guess that technology hasn't made it to small town Oklahoma yet. My dad has to go to the hospital every Monday and they draw blood. Then they call back in the late afternoon with the results. Last week it was to thin and he was having nosebleeds. Hopefully it is going to be ok next Monday.
treappling1 1 year ago
I have APS and lupus and I had mini strokes for 2 years before I had my stroke. 15 years ago it is a pain in my ass I have been on coumadin for 15 years and ugh I always have to have my blood checked but if I keep it checked it is somewhat under control. I hope you feel better soon. Michelle
scarletfire28 1 year ago
@scarletfire28 My dad and brother are both on coumadin and like clock work every monday morning they go get their blood checked waiting for a call that afternoon. That has to be a thorn in your side. I am on baby aspirin other than when I am in the hospital and I get the shot in the belly each day. I wish they could find a different way to handle this so it wasn't so difficult for those of you who have to get your blood checked all the time.
treappling1 1 year ago
@PennyLn777 Thanks. I'm enjoying your videos too. I love that they are short. I think mine are too long.
treappling1 1 year ago
Hi there
how are you feeling today like you i an soooooo fatigued i just want to lay down and die lol you have to laugh or you will cry do you have any family support and what meds are you on have you got a good family doctor i am lucky my husband and daughter care for me i have 2 other daughters one lives in london and the other lives in dorset i thank GOD for computors i would have no life without mine i also have short term memory and problems with recall look after yourself rest up ok
taffytown1 1 year ago
@taffytown1 I do have an excellent support system. My husband is my primary caregiver and I have a 21 year old son who does an excellent job of helping me out. My med list is enormous. My husband makes sure I take the correct meds and doses. With the cognitive fog I was forgetting to take meds or even worse forgetting I took them and then taking them again. I am like you i love the computer. I hope to hear from you more.
treappling1 1 year ago
@treappling1
Hi i used to take so much medication i decided that if i don't feel any better with it i will stop it so now i only take life saving medication and very strong pain meds lol I live in Wales inbetween where Tom Jomes and Anthony Hopkins were born sorry no tallent touched me or mine lol my husband is the chairman of our local Carers Group and a Director with the Carers Service he had to give up work to look after me 15 years ago and got involed with carers rights take care ok bye
taffytown1 1 year ago
Hi there
Post Viral Syndrome is also know as M.E or Chronic Fatigue it is very debilitating i can be in bed sleeping for up to 17 hours a day and still very very tired it's like a sleeping sickness there is no blood test for it just a certain criteria have you got Fibromyalgia that makes you soooo tired and week and it causes a lot of pain Have you tried reflexology or hypnosis or healing i have found this to be very good at times Keep in touch Regard's Geraldine
taffytown1 1 year ago
@taffytown1 I do also have fibromyalgia along with the SLE. Right now I am going through extreme fatigue. I am having to force myself to get up and eat. I can barely hold my eyes open right now. In the past I have tried accupuncture and manipulations and did not have any progress with it.
treappling1 1 year ago
Hi i t took 17 years for me to be dx with this disease i saw Dr G Hughes at his London clinic i also have sjogren's Lupus i am 54 and asprin did not work for me i am on warfarin i have had multiple tia's and post viral syndrome life is a bitch lol keep on fighting i also became ill after the birth of my third child
taffytown1 1 year ago
@taffytown1 What is post viral syndrome? I also wonder if now they check for this when they do the blood work up on pregnant women. It would be so simple just to add this to the list since they are already drawing the blood. 17 years is a long time to search for a diagnosis. How are you since you have been diagnosed?
treappling1 1 year ago
Thank you for the info on APS Foundation of America. I looked at the site today and learned alot more about APS. Again, thank you for leading me to the site so I can learn more about the condition. Hopefully, others will see this also.
treappling1 1 year ago
Have you checked out the APS Foundation of America, Inc's website?
APSFA 1 year ago