Confused and looking for advice

[NatMar]

I am new on this site. I am from Ottawa, Canada. In the past year, i have had a major health crisis that led me to leave my work. A hematologist had in the past years tested me on various clotting markers : i have protein C anticoagulant deficiency and positive antiphospholipid antibodies, that is a persistently positive anti-beta-2 glycoprotein 1 IgM in the high 20s. In January i started to get ill; it began with sharp pain in the spine and neck, with stiffness in fingers and a sense of generalized illness, along with inability to sleep. Fearing a stroke, i had a scan which came back normal. MY illness gradually became worse, i suffered convulsions, tingling in legs, heavy shaking and tremors of left hand, loss of balance, hearing issues with significant tinnitus, laborious breathing, and general inability to function cognitively. Anxiety was a big issue as well. This myriad of symptoms lasted for 4 months, in great intensity, and gradually subsided after that time. I am however left today with cognitive issues, memory loss, excessive sweating, fatigue, and pins and needles. An MRI was done again in May when i had partially recovered from the deep crisis, and came back normal.

I ensured i could see a specialist in APS thinking this was the issue, and recognizing a lot of neurological symptoms, and considering the positive testing from hematologist. This was done in the Ottawa Hospital. However, a new batch of testing was conducted, and this time, oddly ( as it is the first time in 5 years) the antiphospholipid testing came back negative. The specialist therefore has ruled out APS. I am now without care, and quite frightened, as i continue to suffer symptoms, and am quite affected by my condition, which has an impact on my ability to continue to work, and extremely fearful to live through what has been an extremely difficult health crisis.

I had worked hard to see this specialist, and am puzzled of the recent negative testing. Could this be?

I have no idea what to do next to help myself. I because of the coagulation i suffer from i am on aspirin. Yet, i was when i went through my crisis, and I continue to have symptoms, the most scary of all being the cognitive ones and memory loss. As i have not had a documented clot or thrombosis/stroke, any other anticoagulation is ruled out.

any help or advice would be greatly appreciated, and thank you so very much in advance.

[hihannula]

I just moved from Ottawa to Brockville but still go to Riverside for my APS and Lupus. My Dr is Dr Cabral. Get your GP to refer you to him. Look at his profile on line. He is heavily into APS research but also treats patients as well. Give it a try and let me know how it goes ok.

I hope you are feeling a little better today.

Holly

[NatMar in reply to hihannula]

Hi! thank you for your answer. Dr Cabral is the specialist i saw. Kind doctor, and assuredly knowledgeable, but unfortunately is the one as well that has rejected the diagnosis because of the one negative blood test.....

[hihannula in reply to NatMar]

I’m So sorry to hear that NatMar! It doesn’t seem right at all. Does Dr Cabral have access to the other 5 tests that were positive?

I know how upsetting all of this is for you. It took 8 years before I was DX!

Keep us posted. All the best.

Holly

[NatMar]

Thank you so very much for this answer. The frustrating issue for me is that I am convinced i need to be on more potent anticoagulation than aspirin, considering the myriad of symptoms, and the 2 markers for clotting as well as consistent positive antiphospholipid antibodies ( anti beta 2 glycoprotein IgM in high 20s). I worked hard to be referred to specialist in Ottawa, as I have noticed a general lack of knowledge on APS in the medical community in Canada. I succeeded in this, finally, and now, oddly, because of the one negative test, the specialist ruled out all previous testing and description of symptoms, stated that anyway it is the IgG rather than IgM that is of importance, and that my symptoms did not fit the syndrome. MS was mentioned, but I am convinced that this is not it, as it fits a description of only a part of my issues. And i do recognize loads of symptoms in this very helpful site. Thanks for the explanation that the testing sometimes can lead to negative result, this is useful information. I am at a loss on what to do next, and live in fear that I go through another health crisis, and am definitely debilitated now particularly on a the cognitive and memory aspects. Apologies for my ranting and i am very grateful for your previous answer. I sometimes feel that I personally have been let down for years by medicine, and reading that getting help and a diagnosis have been difficult for some, helps somewhat in realizing that I am not alone. Thanks.