Hi, Im looking for some advice as feeling like Im banging my head against a brick.
Im 45, I’ve already been diagnosed with antiphospholipid syndrome in my 20s but had an attack similar symptoms to ms, had an mri and was told I had benign ms, had no further attacks until January this year, 20yrs of nothing,where I had quite a bad attack blurred vision, dizziness, balance problems,terrible headaches, tingling down the right side of my face and feeling awful was sent to hospital suspecting a stroke but that was ruled out, I had an mri end of January waited until April to be told suspected ms as I have lesions on my brain and symptoms fit, had a lumber pucture done in June, had to wait until September to get results by letter to say lp was inconclusive, basically neurologist said it may still be ms it may be antiphospholipid as this can mimic ms but nothing is certain,altnough I’ve already been diagnosed with abtiphospholipid,but still waiting to find out what happens next, all year I’ve had good and bad days with the dizziness, bad head, thought process, and generally feeling unwell, just wondering has anyone else been in this situation of inconclusive tests but showing all signs of ms and how long to get treatment if any, any advice would be great as feeling like I’m being passed off
Yes I had an MRI that found multiple lesions in my brain and c spine indicative of MS.
Lesions appeared old and my Neurologist said it looked like I have had MS for many years.
Because no recent lesions were found I had a lumbar puncture which was inconclusive.
I met the Mcdonald criteria with dissemination in space but not time.
It was only almost 3 years later that my annual MRI found a new lesion that I was formally diagnosed in September.
Ive just started a DMT in December one that my Neurologist decided would be best for me because I’m 60 and apparently it has the least nasty side effects and I won’t be immuno compromised.
Ive just had my first injection and will see how it goes.
Not sure it’s the best treatment as only moderately effective.
I do hope you get some answers soon and treatment that helps you. Take care
Hi Emma,
I’ve had antiphospholipid syndrome for 12 years (am 51). I had a few lesions in my brain, and it also caused transverse myelitis, so lesions in my spine. This has caused huge stiffness in my legs so I walk with 2 sticks. I had 2 clear lumbar punctures in 2012 and 2014 and a clear VEP. Are you on warfarin? Since I’ve been on warfarin with a highish INR I’ve had no changes at all to my annual brain and spine MRIs. Just to confirm though, APLS DOES mimic MS. My damage is entirely neurological in my legs.