DVT deep vein thrombosis forum

       Home    1 2 3 [Next Page>>]

number of replies (49) - Page 1 of 3
Who Else Has Antiphospholipid Syndrome (APS)?
Started by Sharon
Posted: May 20, 2008 at 05:36
This is also known as 'Lupus Anticoagulant' but does not necessarily mean you have lupus or 'Hughes Syndrome'. If you have it, have you had any of these symptoms:

--Multiple Miscarriages
--Neurological Symptoms (muscle weakness, falling, balance/vertigo issues, numbness, etc.) or other symptoms that mymic Multiple Sclerosis
--Stroke or TIA's (transient eschemic attacks--mini strokes)
--Frequent, intense migraine headaches
--Clotting when young, or
--Any other symptoms your doc attributes to this disorder?

In hindsite, every medical issue I've ever had (that is not attributable to an accident or a snakebite) is attributable to this disorder and my FVL. I read that chronic gallbladder problems or early removal of it is common in FVL sufferers, but no connection has been made to know why. I had mine out at 24 y/o!

I'd like to hear from any and all of you w/ APS!
5820
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #1 by Sharon
Posted: May 21, 2008 at 07:54
Let me ask this, since no responses to the last post. How many of you KNOW you were tested for this, even if you were not positive? Especially those of you who are very young and have already clotted--say under 40? To be diagnosed, one has to be tested twice, 3 months apart and come up positive both times.
5858
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #2 by Char
Posted: May 21, 2008 at 11:45
Your info on APS is very interesting and I have had none of your listed disorders. So far have not been tested for a clotting disorder as the DVT/PE came as a unpleasant surprise in Feb. Started on IV Heparin and Coumadin immediately, one week in the hospital, 9 more months of Warfarin and than I will be tested, my Mother and Grandmother had a clotting disorder. My Grandmother died from it, my Mother had 3 bouts of DVT/PE while taking Coumadin, and after 3 years she stopped the Coumadin and never had another DVT/PE. As a much younger woman, long before DVT/PE she had several miscarriages.
I did have 2 mechanical small bowel obstructions repaired in 2002, but cannot relate that to my clotting disorder.
Appreciate your information.

5860
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #3 by Tom in Connecticut
Posted: May 21, 2008 at 12:59
Here is a link to a brochure discussing APS, written for patients:

http://nattinfo.org/natt_publications/antiphospholipid.pdf

The link belongs to the National Alliance for Thrombosis and Thrombophilia (NATT) which is a national non-profit organization who directly represents Patients who have suffered venous blood clots and blood clotting disorders.

Another great source belongs to the "Ask the Doctor" segment on the fvleiden.org webpage. Dr. Stephan Moll of the University Chapel Hill in North Carolina has been helping patients for years by way of the fvleiden.org website and as the Chairman of the Medical and Scientific Advisory Board (MASAB) for the National Alliance for Thrombosis and Thrombophilia (NATT). Anyways, here is the link to Dr. Moll's Q&A regarding APS: http://fvleiden.org/ask/54.html
5861
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #4 by Sharon
Posted: May 30, 2008 at 04:46
Thanks Tom. I am just now catching up on some of the posts I was writing before my fall. I will get on and look at these resources. You have really helped a lot w/ the research.
6064
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #5 by sharon
Posted: May 17, 2010 at 14:51
hi i was diagnosed with antiphospholopid syndrome over 20 years ago i miscarried 5 times but managed 2 succesful pregnancies but during the past 3 years my condition has become very unbearable to cope with ive had mini strokes have a tumour on my leg suffer alot of pain all over and find it difficult to walk my speach has been affected and i cant seem to concentrate its very hard to explain yourself to docs as they dont seem to understand i take alot of meds which take the edge of for a while my legs are swollen as are my ankles and very painful i also have abdomen pain and lower back pain i feel so tired during the day i have no appetite just feel sick i also have alot of cramps in hands and feet my blood tests are poor my d dimer is always high so are my lfts its good to hear there are other sufferers out there as you feel all alone i see the best rheumotologist who is looking into helping me as at this time i feel down and alone hope you all get some help with this awful illness
16384
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #6 by sharon
Posted: May 17, 2010 at 14:52
hi i was diagnosed with antiphospholopid syndrome over 20 years ago i miscarried 5 times but managed 2 succesful pregnancies but during the past 3 years my condition has become very unbearable to cope with ive had mini strokes have a tumour on my leg suffer alot of pain all over and find it difficult to walk my speach has been affected and i cant seem to concentrate its very hard to explain yourself to docs as they dont seem to understand i take alot of meds which take the edge of for a while my legs are swollen as are my ankles and very painful i also have abdomen pain and lower back pain i feel so tired during the day i have no appetite just feel sick i also have alot of cramps in hands and feet my blood tests are poor my d dimer is always high so are my lfts its good to hear there are other sufferers out there as you feel all alone i see the best rheumotologist who is looking into helping me as at this time i feel down and alone hope you all get some help with this awful illness
16385
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #7 by Tim in Minnesota
Posted: May 17, 2010 at 16:27
Sharon:

I'm very sorry to hear how poorly you have been doing lately. I know that APS can cause significant problems for some and for others not as much. It sounds like lately it has been starting to take a toll on you. I think there are some that go through their lives with very little affects once diagnosed and managed through meds (coumadin). Yet others can experience declining symptoms.

I was recently (last year) diagnosed with Lupus Anticoagulent after suffering a spontaneous DVT. So far the most affects that I have are the DVT itself and on-going issues with that, and possibly some other minor syptoms such as Raynaud type. I'm certain that you are aware of the APS site (APS.org). If not you might want to check that out.

It's fortunate that you have found a good doctor to help you. I think sometimes one of the biggest challenges is to find a good doctor (or team of doctors) when you are suffering a depilitating illness. I hope that your doctor can help you to deal with the symptoms, and hopefully progress positively. I think there have been others that have suffered significant symptoms, but have also recovered from those with the right management and care.

I'd be interested in knowing how you are doing and progressing. I think you should know that you are not alone.
16387
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #8 by Roxann
Posted: June 2, 2010 at 21:24
I was diagnosed with APS at 34. Im 39 now. I had my children at age 25 and 28 so no problems with miscarrages,just everything else. From Spinal Stroke to transverse mylitis,cryoglobinenemina. I had the gallbladder remove and was just released from the hospital with severe pain in upper right side. High liver enzymes and they(docs) can't figure it out. Im currently taking 13 mg of warfarin daily. I have my good days, where I feel I can take on the world and bad days with migrain headache,joint pain and extremely tired. Im the running joke as the "white elephant". The docs know one exsist however can't find it
16597
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #9 by Dave
Posted: June 9, 2010 at 11:59
I tested positive for APS on my first lupus anticoagualant test and I am currently waiting for the result of a repeat test. Does anyone know how good the chances are that the repeat test will be negative? (I don't know of any special reason why the 1st test would have been positive - I had been off warfarin for many weeks and wasn't aware of any infections etc.)
I have already had a DVT so I believe I will be put on warfarin indefinitely if APS is confirmed, does anyone know if this is always done?
16660
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #10 by Misty
Posted: June 11, 2010
My husband, 37yrs old, was diagnosed with lupus anticoagulant in the fall of last year. We rushed him to the ER with chest pain and difficulty breathing back in August, that's when we found out he had multiple PEs. After further testing, that's when they determined he had the LAC. It is good to see others that know what this is. However I'm kind of worried about him. He has been on coumadin since that episode last year and today when he went for his routine appt at the coumadin clinic, his levels were at 8.7. They're usually not above 3. The nurse only told him to hold off on the coumadin for 2 nights and she would recheck it on Tuesday. Should I really be concerned? He has also been unusually tired for the past week.

Thanks!
16687
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #11 by Geraldine
Posted: June 12, 2010 at 22:12
Hi
it took 19 years to dx me with antiphospholipid syndrome Lupus Sjogren's and Post viral syndrome i also have many other health issues

16702
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #12 by April
Posted: July 21, 2010 at 04:08
I was diagnosed with APS in 2008 and suffered a massive DVT in my left leg. I suffer from horrible migraines, visual disturbances, fatigue, and extreme joint pain. I tested negative for lupus and RA, my question is does any one else with APS experience joint and muscle pain like I do? My doctors can't seem to give me a definitive answer as to why I experience such horrible pain.
17108
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #13 by Tim in Minnesota
Posted: July 22, 2010 at 17:04
April:

No muscle or joint pain beyond the normal aging things (I'm 52). My hemologist asked me whether I had muscle or joint pain, so she either thought there was a possible correlation between APS, or was wondering about Lupus (I tested negative for Lupus and RA as well). There is one syndrome that is associated with APS that might be a factor....Sjogren's Syndrome. I believe Sjogren's is a connective tissue disorder and is found in some APS patients.

Tim
17128
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #14 by April in MN
Posted: July 23, 2010 at 04:59
Tim thank you soooo much for the reply, It is soooo nice to speak to someone who is familiar with APS! I guess the next step for me would be to ask my doctor about Sjogren syndrome as you mentioned, very interesting. I have been told by my doctors that the reason I have so much joint and muscle pain is because of the way my body is reacting/responding to APS. Its just very frustrating because I don't feel like that is a definitive answer and I really can't find any answers on the internet either. It would just be so nice to know if the pain I go through everyday and the struggle is truly due to APS or if I have something more going on with my body!? So that is basically why I am soooo curious if anyone else with this syndrome experiences what I do everyday.* With much love*

17137
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #15 by Tim in Minnesota
Posted: July 23, 2010 at 14:41
April:

Are you in Minnesota? I would be curious as to what doctors you are seeing or what clinics you are going to. I was with Allina but was disappointed in the care I was getting so recently switched to Fairview. Another reason I switched to Fairview is that they have a Thrombolia and hemofilia specialty through the University of Minnesota Hospitals which is part of Fairview. One of the doctors in that specialty area lists specialization in APS as an interest area of hers. I thought I might want to eventually hook up with those folks if I started having more problems do to the APS. I was also seeing a vascular surgeon for a while because a friend of mine is his Ultrasound Tech. He has a private practice and I was very impressed with him.

Tim
17153
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #16 by April
Posted: July 26, 2010 at 05:29
Yes, I do live in Minnesota near the metro area. I am currently seeing a hematologist and my general practitioner at my small clinic. It probably wouldn't hurt to get a second opinion, where are the clinics you mentioned located and who do you recommend?
17213
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #17 by claire
Posted: July 27, 2010
ok, so I have my ultrasound on my legs next week plus bloodwork to see if I have APS.
I'm freaking out slightly . my bloodwork script says they are testing for ANA , double strand DNA &
rhematoid factor. are these the normal tests to test for APS ??
17220
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #18 by Tim in Minnesota
Posted: July 27, 2010 at 14:47
Claire:

Many of the other tests (RNA, ANA, etc.) are pretty typical while they are testing for APS. The reason is that some people with APS have what is called secondary APS meaning that they have another factor leading towards APS such as Lupus. Don't freak out though. While 50% of people with Lupus also have APS, a vast majority of people have what is called primary APS meaning that there are no other factors or diseases leading to APS. Also, approximately 5% of the population has APS and many of them have no APS symptoms.

Tim
17230
Re: Who Else Has Antiphospholipid Syndrome (APS)?
Reply #19 by Tim in Minnesota
Posted: July 27, 2010 at 15:09
April:

I am on the north side of the metro area. I was with Allina Clinic in Coon Rapids but had only so-so experiences with them and recently a pretty negative experience. Do to that I decided I needed to change primary care doctors.

In the meantime I had been doing research on APS resources in Minnesota and had found the Center for Bleeding Disorders at the University of Minnesota Medical Center which is part of Fairview. If you go to their web site (uofmmedicalcenter.org) you will see that they have 3 doctors associated, and one is has a focus in APS. I have not met with them nor have I made an appointment. I will potentially in the future depending on how things go.

Based on the Center for Bleeding Disorders being part of Fairview, and since there is a Fairview Clinic near my house in Brooklyn Park (I'm in Champlin) I decided to check them out. I saw a doctor there that so far I am very impressed with...Doctor Ailabouni. When I met him and told him of my medical background he told me he had a patient with CAPS (Catostrophic APS) last summer. It took them a while to diagnose, but they did and the patient is doing fine. Needless to say I switched my primary care to Ailabouni and transfered all of my records from Allina to Fairview.

My hemotologist who I was definitely not impressed with was with Minnesota Oncology who has offices on the Mercy Campus. Allina outsources much of their speciatly areas which also doesn't impress me.

My Vascular Doctor was Dr. Walvatne who has a private practice in Coon Rapids. I found him via a buddy of mine who is his ultrasound tech. Walvatne is fantastic and without him I think I would have been terribly lost. He is very compassionate and knowledgeable.

It has been quite a trip over the past year!

Tim
17231
   1 2 3 [Next Page>>]
Reply to this topic    or     Start New Topic

Your Name:
Reply Subject: Re: Who Else Has Antiphospholipid Syndrome (APS)?
Comments:
(You may enter up to 3001 characters)

characters left

Type the characters shown in the image for verification 2: