Factor Leiden V.

[danluc]

Good morning from east coast Canada. Wondering if anyone out there has similar issues. I have tested positive for Leiden V mutation, and although, LA, and aCL were negative, I did test positive twice for ac-anti b2 glycol. at least at 12 weeks interval. I have all the central nervous system symptoms that fit quite perfectly in the APS guidelines, however, I have been lucky to have had no major events. The only thing I can think of is years of infertility, finally getting pregnant, having premature labour at 28 weeks (I stayed on complete bedrest), to finally deliver at 38 weeks a healthy boy, but as noticed by the OBGYN, an extremely small placenta.

My neurologist thinks ASP is the most likely answer. Hematologist thinks it's a load of bull feathers. I will be seeing an APS specialist but there is a year to two years wait.

anyone else with similar blood results?

[Manofmendip]

Hi

It is possible to have APS diagnosed by symptoms only, 'seronegative APS'.

I have asked my colleague MaryF to reply to you but she is currently away.

I think you should ask you Neurologist to put you on some protective medication, even if it is just Aspirin, and try to push for an earlier appointment with an APS specialist, two years is not acceptable.

I don't know how it works in Canada but is it possible to pay to see the APS Dr sooner, as it is here?

Best wishes.

Dave

[Manofmendip in reply to Manofmendip]

Have a look at this:

healthunlocked.com/hughes-s...

[danluc in reply to Manofmendip]

Thanks so much for the info. Here, in New-Brunswick, Canada, specialists take a a very long time to see, often pushing patients to seek specialists in other provinces, or if people can afford it, will cross to USA for treatments. My province is a small one all great specialists prefer big cities. My neurologist still believes we are on the right track, and he his retesting my blood. He did start me on ASA which I am grateful for. At least, I feel like we are doing something. I will have me interesting reading thanks to you. Cheers.

[Manofmendip in reply to danluc]

You are most welcome.

What is ASA?

Cheers.

Dave

[Lure2 in reply to Manofmendip]

Hi Dave, ASA is "acetylsalicylic acid" . In Sweden known as Trombyl (anticoagulating drug) and in England I think you call it low dose Aspirin

Best to you from me.

Kerstin

[Manofmendip in reply to Lure2]

Thanks Kerstin

Dave

[danluc in reply to Manofmendip]

Baby aspirin.

[Lure2]

Hi, I wonder if you mean you tested positive twice for Kardiolipinantibodies and Beta2Glycoprotein1 ? I have those two antibodies and some others also strongly positive.

If you answer "yes" then I guess you are APS-positive.

I agree with Dave that 2 years is absolutely too long time to wait for anticoaglation which you need if you have APS. We have found that Neurologists are not so good on this illness but your Neurologist seems to take responsibility for you health.

We are no doctors here but if I were you I think I should try to get a meeting with an APS-doctor as soon as possible. Perhaps you can get some good help from your Neurologist.

Hope to hear from you about the antibodies. Stay well!

Best wishes from Kerstin in Stockholm

[danluc in reply to Lure2]

Only positive for Beta2-Glyc 1.

[Salty]

Dear Damluc

I agree with Apsnotfab, you do have APS (not seronegative). Many if not most patients only test positive for one of the three main antibodies. There is no reason to test again and there is risk of testing again because the antibodies can wax and wane and if you test negative since many physicians are poorly informed about APS they may then tell you, "see you don't have it." You don't say what your neurological symptoms are, but if they are memory loss, word finding difficulty, etc they would likely respond to anticoagulation. I also would stick with your neurologist and see if she is willing to order you a "heparin therapeutic trial". Look up the one page article "heparin, antiphospholipid antibodies and the brain" which you can find on Google and send to her.

[danluc]

Thanks To all of you. My symptoms are brain fog, forgetting my words, my thoughts. I seriously thought I was beginning Alzheimer's. Severe migraines, balance issues, trembling, pain, extreme fatigue. Honestly, everything fits. Another issue is because the hematologist won't confirm APS, my disability is in jeopardy. I will try To see an APS au soon as possible, Feeling a bit discouraged at the moment. Happy To have you all here .

[MaryF Administrator]

Hi, keep contacting the APS specialist's office, as a cancellation may come up which is much sooner than what is being suggested. MaryF

[danluc in reply to MaryF]

I will try that. Thanks!