"Anne is a 37 yr old female who presented with acute right leg ischemia......
Antiphospholipid antibody tests have been conducted... This is consistent with the presence of a Lupus anticoagulant by DRVVT & TSVT analysis. Suggest repeat in 12 weeks to confirm persistence of the LA."
that's the brief version. I've had many other more serious episodes of clotting this year. BUT - is this a diagnosis? If so, s this a diagnosis of APS or Lupus? Is it that APS falls under the Lupus umbrella and I have APS, pr Lupus? or, both?
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anniesensi
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Hi Ann: I would say this MD is trying to rule out a false/positive. He may do 3 tests, each 12 weeks apart, to accomplish a true dx. I am certainly NOT an MD, I'm just used to reading their writing and interpreting what they meant to say.(20 years experience in all facets of a teaching hospital) A little caution; what they say in England may mean something completely different in the states. I trip up on colloquialisms all the time. I was going to write a list of Brittish sayings I needed translation on and then I decided I could certainly get the jist of what they wanted to say. (Talk about slow on the uptake, here.) My body went the other way. I am not positive for Lupus, but am positive for anticardiolipin antibodies. My own doctor did the 3 segment test as well. You can't always trust a test. Firstly, there is human error factor. Higher than one might think. Then the test itself doesn't always work. For example, I no longer read positive for Rheumatic Fever. I had a well documented, severe case in my late teens/early twenties. In bed, active for 5 years. Witnessed by the tutors who tutored me, my old family doctor (the Dr.Welby type), every paramedic my father taught in our home, and all of my very loyal friends. We never knew which side of my body it would attack; only that it would be on the opposite side. I was a unique specimen due to allergies to virtually all antibiotics that were available in the 1960's. Now, the medical books state that the available tests they have to test for rheumatic fever won't work if you had it over 20 years ago. Hmmmm. So to an MD, it allows for a chance that you never had it. Unfortunately, you're verbal testimony isn't scientific enough.
I think your MD is just making sure to get a true answer to the tests as they are most finicky. Much depends on the quality of the lab reading the test results. Lots of factors, thus the three tests. If you test positive 2/3, I would say he could give you a definitive diagnosis. He is just being thorough. I think. I don't know if treatment changes if you are postive for the Lupus side of things, the anticardiolipin side, both or none. Some people test negative but are positive; the patients have the best test which is listening to THEIR OWN SCREAMING BODY. But it's hard to get MD's to listen to that test as well. At least they are well on their way to getting a true and safe diagnosis so that they are able to get treatment correct for you.
I hope they straighten you out soon as sometimes I just can't believe how long it takes in England. They know what the patient needs, but still it could take additional months of paperwork before they patient is actually able to get it. It must be so very frustrating and seems so unnecessary.
Ann, I wish you patience for the future, a sence of humor for the present.
Will try to help! First off - the Ischemia usually means restricted blood flow, so it seems that somewhere the Dr found restricted blood flow - maybe from a clot/DVT. The presence of the Lupus Anticoagulant could prob mean he found the L. A. Antibody - not that you have Lupus - but the name of the Antibody (one of antibody, factors or proteins) in APS/APLS. and the Drs usually like to re-check in a couple of months. Sometimes these Antibodies don't show up unless you are in a flare - but anyways - it does sound like you could hv APS and prob a DVT/clot somewhere. Your dr should give you more info! Like where is your clot....what do you do now!!!!! If not - get yourself to another Dr ASAP! Go to a HEMO DR quick!!!!!
Thank you so much for your reply, This was part of the letter I received on discharge from my most recent hospital stay for clotting.I've had four stays in hospital for ischemia in my right leg, one of which was loss of pulse to the groin - repaired by surgeons at Kings and one for severe pulmonary emboli. I was given a diagnosis of APS which I had thought was based upon my symptoms - I had thought the test was negative...
I should have made it more clear in my post - I have been really well cared for since my symptoms began at the end of last year, and am now on Warfarin and Clexane and also a low dose statin for good measure!
I wish that I had been more well cared for a couple of years ago though, I was rushed by ambulance to A&E with stroke like symptoms. The Dr decided that a stroke was so unlikely that it was assumed to have been an MS relapse. No treatment for stroke given...
How I would love to name and shame THAT hospital! All I will say is, to put the mind of anybody going for tests now, that hospital has since closed down, and WAS situated on the edge of a rather upmarket town in the South East.
Lupus anticougulant or lac is not lupus, lupus is s totally different disease then lac or aps. Fifty years ago it was thought that if you had one then you had both. Truth is only a small percent of lac, or aps patients actually go on to develop lupus sle.
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