Hi to everyone. I am new here and is concerned about APS. In 2012 I became numb from waist down. I had unsteady gait and burning pain plus other symptoms. Hospitalised I had brain and spine MRIs which showed lesions in brain, Tspine and Cspine. I also tested positive for Obands in the CSF. They queried MS. Another neurologist also said MS
Went to MS clinic 4 months later 2 hrs away and did a lot of tests. They did not see me again until 9 months later and said it was MS. All tests were negative but they mishandled the sample for APS so it was not done. I redid the test that day. I was seen 12 weeks later and told I tested positive for aCL and so they then said it could be APS and they would not see me again and I should see a hematologist. It would take me 3 months to see one here in Canada so I went to the US as I was going to spend the winter there and saw a hematologist. He said even with the positive aPL there was something else and so he sent me to a neurologist who looked through all the medical records I took with me, examined me and said it was MS but the positive aPL test made it complicated. He sent me for a spinal MRI. I had also done a ton of blood work for the hema.
Results came back and aPL still positive but hema said he could not diagnose me with APS syndrome as it also takes a thrombotic incident along with the positive tests to do so and I have never had one. MRI result came back and lesions were seen in T and C spine. Both docs conferred and I was diagnosed with MS. I had started taking 325mg aspirin from the first positive test. I did not feel any better but is getting worst with pain, difficulty walking and now having bowel accidents. I had started off with difficulty urinating and that continues.
Back in Canada I cannot find an MS specialist (as there are none in my city) and I am wondering if it's APS although it feels like MS to me but from reading, the symptoms of both are similar so I am very concerned. Can anyone give me some advice on my condition? Thanks for reading this lengthy post and I look forward to your help.