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    Old 04-14-2004, 09:51 PM   #1
    sandips
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    confused on aps diagnosis

    i have a positive ana of 1-640 anticardiolipin ct of 28 and a positive lupus anticoagulant test & have 1 lesion on brain.doc seems to think i have aps and wants to put me on coumandin.i have severe migraines & just dont feel well; tired drained etc.i have 3 children & had no probs with pregnacy and from what ive read most people with aps has probs with pregnacy.my mom had lupus & later developed leukemia & died at age 38. dont want to go on coumadin unless i have too ..any info on all this is appreicated.thanks

     
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    Old 04-14-2004, 11:31 PM   #2
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    Re: confused on aps diagnosis

    Hi sandips

    First of all, you do for sure have APS. With your symptoms, and with the positive antibodies that you have- you have it! Your doctor is VERY right about the blood thinners. I KNOW that if you go on the coumadin that you will feel 100% better than you do right now. The reason that I know this, is because I have APS too, and I felt the same way. Once your INR gets within range with the coumadin, you will notice a HUGE difference in your migraines and all of your other symptoms. WIth me, I knew that I needed the blood thinners YEARS ago after I started them. I am a new person!! I don't like having to medicate myself, but seriously.. if you go on them you will thank me for prompting you to do so!!!

    Not all women with APS have recurrent miscarraiges. We just read about that a lot because it is to prompt doctors to test women for APS when they do have recurrent ones. I have had strokes, but no miscarraiges.

    Also, the thing with APS is that the blood is "sticky" therefore you have a higher tendancy to clot. The healing with the clots takes a very long time to happen with the blood thinners, so the sooner you go on them the sooner the clots will dissolve. Right now, you are at VERY high risk for strokes, leg clots, heart attacks and other clotting events! I recommend the coumadin HIGHLY to you right now, becuase if you don't then you may have a stroke, heart attack or leg clot. It is so much better to be safe than sorry hon!! PLEASE consider taking them.. they will save your life and you will feel a bunch better. Remember that your INR (which tells how thick or thin your blood is) must be kept between 3-4. Some doctors only recommend that it is between 2 and 3 but we need to have our blood even thinner than most people do!!! If you have any questions about APS.. please don't hesitate to ask. And I give your doctor HUGE cudo's for actually knowing about APS.. so many don't!!! I had to go to Dr. Hughes in England, who is the fellow that found APS in women back in the 1980's. No one here where I live could figure out what was wrong wiht me and he diagnosed me in about half an hour!!! Please take care and I hope that you decide on the coumadin.

    ~Luv, Angelic

     
    Old 04-15-2004, 07:27 AM   #3
    sandips
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    Re: confused on aps diagnosis

    hi angelic thanks for the info.how do you know i for sure have aps? this is all new to me & i don't understand it. what tells you for sure that i have it?is it the anticardiolipin ct?or the lupus anticoagulant? or the positive ana?or all of it combined?the doc wants to start coumadin for the headaches & if it doesn't help them he said he would take me off of it .why would he take me off if it didn't help headaches would i not still need it for aps if thats what i have? still confused?

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    Old 04-15-2004, 08:04 AM   #4
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    Re: confused on aps diagnosis

    Most drs. only treat APS with baby aspirin, until a clotting incident happens. That's when they introduce coumadin to the daily regimine. Has your dr. had you on baby aspirin at all? At the very least, you should be on that, it separates the platelets and helps them from sticking together. From personal experience, (I have lupus and APS), the baby aspirin didn't help my headaches, but the coumadin certainly did (when my INR was kept at 3.0 or higher). Angelic can better answer your questions regarding your bloodwork. For me, I was positive on all 3 tests. Hope this helps. Shari

     
    Old 04-15-2004, 08:13 AM   #5
    sandips
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    Re: confused on aps diagnosis

    i have been on aspirin but it did not help headaches.that is why he wants to try coumadin.did you have clot before you started coumadin or did you start it for headaches?

     
    Old 04-15-2004, 08:18 AM   #6
    sandips
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    Re: confused on aps diagnosis

    also sampy123 does ana normally elevate with hughes syndrome?my doctor wants to start coumadin for headaches butwhy would he stop treatment if it doesn't help headaches?do i not need it just to prevent clots?

     
    Old 04-15-2004, 09:02 AM   #7
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    Re: confused on aps diagnosis

    Not everyone who has APS has a clotting incident. That's why many drs. wait for an episode before starting a patient on coumadin. I don't understand why they wait for a problem first. Had I been put on Coumadin first, I may not have had to have open-heart surgery. They found three HUGE blood clots there (all stuck together and the size of a baseball) and THEN I was started on Coumadin. Not everyone who has lupus, has APS. I happen to have both. I personally have a high ANA, but I can't tell you which disease is causing my numbers to soar. By the way, my APS is on auto-pilot, my body is still making small clots, despite the Coumadin. I've already had 2 TIA's (small strokes) since being on Coumadin. One clot hit my eye, the other temporarily paralyzed my entire right side. So my feeling is, I'd take the coumadin for the headaches and possible prevention of clots down the road. Why wait for trouble first?

     
    Old 04-15-2004, 10:02 AM   #8
    sandips
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    Re: confused on aps diagnosis

    how did you find out about the clots that were at your heart? do they normally do scans to look for clots if you haven't had one yet?rheum dr wants me to have doppler of leg and artery but hematologist says no sense in it because clots can be anywhere and those 2 test would only show legs & arteries.also i have no symptons of clots. did you have symptoms before you found out you had clots?

     
    Old 04-15-2004, 10:55 AM   #9
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    Re: confused on aps diagnosis

    I had a little shortness of breath, which I attributed to my weight. However, the real clue was that my lower legs were both swollen and the dr. sent me for an echo with doppler to rule out clots. I couldn't understand why they were scanning my heart, when my legs were swollen. Dr. said that it was highly unusual to develop clots in both legs at the same time, and had a feeling there was something blocking the flow of blood to my legs. And I thought it was too much salt! Thank G-d she was familiar with APS!

     
    Old 04-15-2004, 12:35 PM   #10
    sandips
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    Re: confused on aps diagnosis

    thanks for all the info i hope angelic will reply about the #'s on bloodwork.i have read the higher the anticardiolipin count the more risk for strokes. at first it was 18 & 6 weeks ago it was 28 & yesterday they took more blood & i should hear from that in a couple of days.also i'm wondering has anyone with aps ever tryed alternative medicine?i am considering coumandin but am curious about alternative meds for aps.thanks for all your help.

     
    Old 04-16-2004, 01:36 PM   #11
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    Re: confused on aps diagnosis

    Hey guys,

    I am very concerned about your risk for clotting sandips, because you show the positive values on both the APS screening tests. Do you know if your anticardiolipin test is IgG or IgM? When one is high positive that will tell your risk for clots, but having a higher test result in general on the tests puts you at high risk for clotting. If your doctor has tried you on aspirin and it hasn't helped, the next step is Coumadin. Often doctors will jump on the Coumadin if your tests results are elevated (and you have both of them positive) to prevent you from clotting. So many are NOT preventative doctors, they are reactive so I am very impressed that your doctor wants to prevent a clot!! I would go with the coumadin The ANA is for Lupus- and I think I meantioned that Lupus and APS can go together, but APS can occur on its own in 30% of patients. Please take care and keep asking questions. When we are empowered with information we become more at ease. Talk to you soon!

    ~Luv, Angelic

     
    Old 04-16-2004, 09:19 PM   #12
    sandips
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    Re: confused on aps diagnosis

    thanks angelicbrat for the info.i think my igm was the one that was positive.did you mean you would jump on the coumadin if igg & igm were high or if the anticardiolipin & the lupus anticoagulant was positive? i know for sure that only one of the igg or igm was positive and the other was negative.i'm pretty sure it was the igm that was elevated but i 'll find out to be sure .does it make a difference which one it is?you said the ana was for lupus and it was 1:640 which i understand is very high but they say they don't think i have the lupus .as i said before mymom did have lupus and later developed leukemia and passed away at age 38.if the ana is for lupus but they don't think i have it why else would it be so high? can the aps make it that high? sorry didn't mean too write so much just kept coming up with questions.thanks for all your help & taking time to explain all of this to me.

     
    Old 04-16-2004, 09:47 PM   #13
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    Re: confused on aps diagnosis

    angelicbrat,sorry i forgot to mention that the hematologist ordered for me to have another mri wednesday when i saw him & i had it done today.my nerologist ordered one in december when he ordered all of this bloodwork & on the mri they said i had 1 lesion on rgt front part of brain & hematologist wants to make sure it wasn't a clot forming& make sure no more lesions have turned up.the hematologist also took more blood to see if cardiolipin was still high & ana &lupus anticoagulant because i didn't want to go on coumadin until i had more blood work 8 weeks after last positive resaults.i have had 2 rounds of bloodwork already but they were only 4 weeks apart and ive read that you should have 2 rounds at least 6-8 weeks apart .will let you know when i get new results.

     
    Old 04-17-2004, 01:44 AM   #14
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    Re: confused on aps diagnosis

    Hi sandips,

    Do you have the symptoms of Lupus??? That is WAY to high of an ANA to be false positive!! Do you know what the pattern is? It would say "speckled" or "Nucleur" or "rimmed" etc. That can tell what disease is causing it, but my bet is LUPUS. You have the family history, the APS blood work/symptoms and if you have symptoms of Lupus then you have it. Check out the top of the Lupus board entitled "Criteria to Diagnose Lupus" so that you can tell me how many symptoms you have of Lupus. And they dont have to be symptoms that you have right now- they can be symptoms that you have had in the past. Do you have rashes, joint pain, mouth sores, history of kidney problems, etc? Please let me know so that I can advise you further.

    I would suspect that you need coumadin because 1) You have a lesion 2) you have BOTH the anticardiolipin and the Lupus anticoagulant 3) you have symptoms of APS Because of all of that, you NEED Coumadin!!

    APS can mimik MS to a T! Many patients are diagnosed with MS and then they find out that they indeed have APS instead. I am just glad that your doctor recognized that. As for the Lupus- I would need to hear your symptoms.. but I suspect that if you have symptoms then you have that too. And even if you don't, you may be developing it. You need to be very closely monitored right now.. so I am glad they repeated the MRI and the blood work. Please ask as many questions as you want.. thats why I am here! take care darlin!!

    ~Luv, AngelicBrat

     
    Old 04-17-2004, 09:46 PM   #15
    sandips
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    Re: confused on aps diagnosis

    i do not have a copy of the ana right now but ill let you know which pattern when i get it. as far as symptomsfor lupus the only ones i have is severe headaches,mom had lupus,positive ana, anticardiolipin antibodies,1 lesion on brain, and positive lupus anticoagulant.little bit of aches such as back & hips &fatigue,but not severe,just don't feel as good as i used too but that could be getting older & having 3 kids.ana's are not just to detect lupus are they?why do you think i have lesion on brain does that go along with aps or result from migraines?ill let you know about bloodwork & mri as soon as i find out.probably will be monday or tuesday.thanks again for all the info. sandi

     
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