Hello all, thank you for allowing me to join your little group. I've been reading past posts and I'm wondering if you all can give me some insight.
Although I have had positive blood work for ACL since 2012, I was just diagnosed with APS following a TIA in April. Prior to that, I had only had non-diagnostic signs such as one miscarriage, Chronic migraines, ongoing neurological symptoms (visual symptoms, imbalance, vertigo), mitral valve prolapse, Dysautonomia, and livedo reticularis. I also have two additional clotting mutations, MTHFR and PAI-1. My meds prior to April were just 1500 mg of keppra for migraine prevention. I was breastfeeding so no aspirin. I took twice daily lovenox through two successful pregnancies in 2013 and 2015.
My event in April was ruled a TIA after no findings on CT, MRI/MRA, two EEGs (neuro was convinced of seizures), etc. my hematologist prescribed xarelto, I think because I also have celiac disease and I eat a lot of vitamin k rich foods in order to avoid gluten.
Since my TIA, I feel myself disintegrating. I have daily frightening episodes where I feel extremely foggy,dizzy, and confused. My memory is diminished and I regularly can't find the words to say what I'm trying to say. At times simple tasks require significant concentration. I have constant facial twitching that drives me crazy but no one else can see it. I have had multiple episodes that are intense (although not as bad as my TIA) and I feel weakness in my left arm and leg following them. The last big episode was a week ago. I went to my GP to follow up last Monday. She ordered another MRI which showed nothing but I still have weakness and I still have these smaller episodes daily. She was able to identify weakness in the leg with the physical neuro strength tests so there is that. In general though, I just feel horrible. Aching, exhausted, dizzy, nauseated. All the time. I can't take this.
I'm reading that most of you are on warfarin and know of an INR range that you feel best at. Does this mean you can reduce some of these symptoms this way? I have an appt with my hematologist Monday and I would like to discuss switching to warfarin if this works for some of you. I can't accept that this is now my new standard of living! I am 34 with two small children and I work full time in a clinical mental health setting. I need energy and full brain capacity.
At my visit last week my doctor thought I had a small stroke (so ordered MRI) but also wondered about MS, she said there are notes from the radiologist on the April MRI of "white spots" indicative of "hypomyleination." But when I asked what that meant she wasn't very clear. She said really the could just be spots from all of the many thousands of migraines through the years. I doubt I have MS, I'm thinking this is all APS and We don't have the right treatment figured out. I'm trying to decide what I should say to my hematologist on Monday.
Additionally, I know I'll be asked of I have an APS specialist. I live 600 miles from anyone on the apsaction list. If it comes to that, I'll work on getting up to see someone, but that will be very expensive and difficult if I can manage with the docs I have in my own area!
I would love any insight from you all that have such experience in this area! Thank you!!