I recently was given the diagnosis of Probable MS. I then had subsequent blood tests and the results came back with red flags. I have been referred to haematology for antiphospholipid syndrome. The neuro has told the ms nurse that if the referral investigations come back as negative for APS then it is back to MS. has anyone experienced something similar? Is it possible to have both? It sounds strange but I would much prefer MS, as whilst the physical effects are more impactful, it doesn’t have the ‘this unwarned complication has a 50% chance of death and immediate admittal to ICU’ risk.
I just don’t know what to think or how to feel right now
Hello, I had optic neuritis as my first clinical attack. I had quite a few blood tests, a mri and was referred to in the first instance a general/ stroke neurologist. He didn’t think I had ms (in fact in my notes he had written probably not ms) and did yet more blood tests - one of which was for Hughes syndrome otherwise known as APS - he did this because of my history of migraines. I wasn’t convinced as I knew my mri was abnormal so I asked a few more questions and he then referred me to a specialist ms neurologist- who said I had possible ms based on my mri and ON. The specialist ms neuro then refered me for a further mri with gd enhancement and a lumber puncture. He also did another test for APS as the first test showed I had elevated levels for the APS anti bodies. After all this I then got a definite MS diagnosis and he said my blood work was a red Herron. I then paid to see a rheumatologist privately as the blood test results were playing on my mind. Net outcome I have elevated levels but not sufficient to be diagnosed with APS and therefore requiring warfarin but above normal levels. He recommended I take a baby aspirin which actually turned out was recommended to stop the flushing due to my ms meds. My understanding is you can have both unfortunately. You also need to have several weeks between blood tests. Really you should have tests investigations relevant to your presenting symptoms. Not sure if this helps at all.
Thank you for your experience. The information I have been given from the neuro via the MS nurse seems to be the neuro thinks it is either/or, not both. When I saw the neuro he informed me that my MRI with contrast showed 3 lesions in different areas, and I presented with left sided loss of sensitivity. At the end of that appointment the neuro appeared convinced that it was MS, and the blood tests were ‘box ticking’. So I am a little bit at sixes and sevens now! not entirely sure what to think, but if it’s either/or, at least with MS I know what will come rather than the risk of CAPS
