My diagnosis is not definite yet as the antibodies haven't been confirmed but my doctors already told me that no matter the next antibodies tests will show I will receive life-long therapy.
I tried to google and get answers from my doctors but didn't find much in German, the English sites were so much more informative.
Brief history of mine:
-starting to show neurological symptons around summer 2012, mainly bladder in the beginning, lost ability to walk properly in 2013, got it back after physiotherapy, still sometimes have problems, especially with stairs (legs start to burn as well when walking for longer distances and my muscles get weaker more easily and my balance is poor)
-low-grade ataxtia was confirmed in 2016, multiple sclerosis and spinocerebellar ataxia was ruled out
-constant headaches that would not respond to pain meds (those started around 2012/2013)
-eye-movement disorder confirmed in 2016 (slowed pursuit and increased saccades)
Noone knew what was causing those symptons so eventually I was told it was psychosomatic. I just got used to it even though I lost the ability to do certain things like horse-riding as my legs just wouldn't work right.
In March this year I was diagnosed with DVT which was quite a shock because there were no risk factors at all. I am neither obese nor do I take the pill nor am I old enough - at least I thought so. I am 29. Back then, I just thought it was a strained muscle.
Was put on Pradaxa and then some great things happened. My headaches vanished and my legs stopped burning when I walked stairs or longer distances. After three months they stopped the Pradaxa therapy and I was sent to a German university hospital to get blood screenings done.
I tested positive for AntiCardioplin and Anti-ßeta-2-glycoprotein and my titers were really high. Negative for Lupus anticoagulans but also positive for Faktor-V-Leiden-mutation so I was classified as high-risk-whatever and went straight back for Pradaxa. The university hospital doctors were quite clear that it was crucial for me to stay on meds at least until the antibodies vanish.
Now I have so many questions and even though my doctors are really supportive they cannot answer all of them.
1) If I got it right there is still a chance that those antibodies won't be confirmed and therefore I do not have APS? My doctors told me not to hope as my titers were so high and after going through my medical history again they even think it wasn't my first thrombosis. Does anyone know if it ever happened? I mean that the antibodies were just positive once?
2) In case the antibodies are confirmed in October what kind of doctor should I see? Frankly, I haven't seen many doctors and tried to avoid them because it is no fun to suffer and then be told it is all psychosomatic. The only times I went were when my family urged me, especially when I started to fall down stairs more often as my balance got so poor. I even didn't want to see a doctor with the thrombosis until somone made me promise to go. So I would like to know what kind of doctors I should see and what kind of doctors I can avoid. The less the better.
3) Is anyone here with long-term experience with Pradaxa? I know that Pradaxa was introduced only a few years ago but maybe someone takes it for a few years now? If you could share your experiences I'd be really glad. I like the drug because I have no to little side-effects but if I need to take it for the rest of life (and none of my doctors is willing to put me off ever again, instead told me to adjust lifestyle to life-long therapy now) I would be happy to learn some long-term experiences.
4) Last question: Any singers here? I am in classical training and Pradaxa seems to have an influence on my voice but I learned that anticoagulation drugs can increase the danger of microbleedings on the vocal chords. Does anyone else experience problems with voice while on those kind of meds?
I am sorry for this novel but there are so many things I feel insecure about and being told not to hope for negative antibody test results was a blow.
Thank you so much for taking the time to read this. Apologizes for my English and a heartfelt thank you for any answers, they'll be appreciated! Thank you!