UPDATE

[jilly50]

Well it's been a long time since being on here , but after months and months of injections and months of the dreaded RAT POISON=WARFARIN ..... it's been a long haul , but to my SHOCK ... my consultant mis-diagnosed , its been heartbreaking for all involved to b put through such torture , but mistakes do happen was my ANSWER

[HollyHeski Administrator]

What was the misdiagnoses?

[jilly50 in reply to HollyHeski]

APS

[Yllek]

So what diagnosis do you now have?

I hope you're getting the right treatment and are feeling better.

Kelly

[Wittycjt]

Be very careful Jilly...as apsnot fab says and I agree, you're walking a tight-wire and don't want to be falling off without a net. Ask, ask, ask! Hugs, Cindy in NJ

[Puska]

I have to agree with the other responses here. Antibodies can fluctuate but can activate at any time. And really no one truly knows what starts that activation. I firmly believe in my case it was severe stress during the time my mother was in palliative care from a stroke then eventual death. Within 6 weeks I had the DVT. I cannot dismiss the coincidence. And no one knows what stress situations will happen in the future.

[jilly50]

Well to be totally honest hun they are now saying i never had it in the first place , although i have all the sign's ... i.e . livedo , blood clots on the brain , but they are now saying these are caused by years of smoking ? , i,m at my wits end , always known iv'e had fibromialgia , but now this is what they are putting it down to , that and osteoarthritis , mmmmm oh well i will just put up and shut up i guess .

[jilly50]

Oh i did that with no joy , they showed me a computer screen with all these tests on it and said LOOK , they are negative , you dont have it , can't understand how one prof can say i have then another say's i don't , i have't had treatment for 3 months , i,m only on hydro .

[jilly50]

oh i,m bk on aspirin hun as i was on that for heart problems for years but they withdrew it , i have tried endless times to contact the lady in question but she was a locum at my hospital , and she has moved on , and no one will help me contact her .

[jilly50]

dumfries and galloway hun

[jilly50]

thanx

[Lure2]

I agree with the very good answers you have got from experienced people with the same illness.

Two things are important;

1) a Specialist of autoimmun illnesses who has had patients with HS/APS before so he or she knows what it is all about - too thick blood that has to be properly and stable thinned.There are few of them.

2) Anticoagulation that works as it should, at a very often rather high INR of 3.5 - 4.0 to avoid the clots, PE, DVTs, heart-issues etc etc

Best wishes from Kerstin in Stockholm

[GinaD]

There is a school of thought among docs that APS is over diagnosed - they can't believe that there are so many people who have APS or related blood disorders. So they point to the occasional negative test as proof that a given patient does not have and perhaps never had APS. Sometimes the truth is hard to accept. I'm no expert and certainly no scientist, but from our reading it looks like the standard Western diet and lifestyle fosters autoimmunity, cancer, diabetes and other chronic conditions. I too have encountered a Doctor who does not believe I have or ever had APS. He begged me to come off warfarin. I declined. And I continue to do just fine on the rat poison.

And remember, we have sticky blood. Inside a test tube where the blood is being tested, that blood is not surrounded by an entire, overactive immune system. When an INR says that our blood is thin inside the test strip or tube, that actually means that inside our bodies the blood is behaving like normal, like it is supposed to. If a rat with APS gobbled up some of that rat poison he would actually be a healthier rat with more energy, apetite and life ( assuming he consumed the right amount of rat poison.)

[lupus-support1 Administrator]

I regret but I agree with Lynn and others. Livedo reticularis is a very particular rash and is not caused by FM which unfortunately is a "catch all" for doctors who are neither experts in FM or in Hughes/APs. I have both SLE and APS/Hughes and can tell you that there are many doctors who "don't believe" there is a condition called Hughes/APS.

Please seek out a specialist. I am not a medical doctor and cannot advise you in any way, but not taking anything, including baby aspirin, given your condition, may be risky. The fact you have written here suggests to me, that you are concerned about your "mis-diagnosis." Franky, most specialists, if not all specialists in SLE and Hughes will tell you that blood tests can and do change. The doctor is not the one taking the risk of misdiagnosis! If you have had positive blood tests, even if they turn negative, does not necessarily mean that you were misdiagnosed. It just means that at that moment in time, the blood tests were negative. It also means the doctor may not be a specialist!

There is also a condition called "sero-negative" SLE; I am unsure whether this applies to Hughes, but this simply means that a small proportion of patients may have "negative" blood tests, but based on clinical evaluation, the patient has that medical condition!

With good wishes,

Ros