I’m new here! I’m in limbo at the moment. For the past 5 years I had been lead to believe my symptoms - pain, fatigue irritable bowel/bladder etc were due to fibromyalgia and that the jerks I’ve been experiencing are a form of epilepsy.
But 3 weeks ago I suddenly couldn’t walk. I went to A + E and they identified that the reflexes in my knees were too sensitive aswell as my legs feeling like they were lead weights. They did tests including MRI which showed areas of white plaque and also did a lumbar puncture to ‘rule out’ MS. I am now waiting for them to send me an appointment to get the results.
I am just wondering, was anyone else diagnosed as having something else which ended up being MS all along? In my mind it all seems to fit into place that I’ve been suffering from MS all along - although obviously I’m no expert but they did say that when the did an MRI 3 years ago whilst investigating the epilepsy there were areas of white plaque then but they were smaller than they are now! I was never told this at the time though!
I’d be interested to hear if anyone else has had a similar experience to me.
Thank you for your replies ladies! Sounds like you’ve had a hard time getting diagnosed then - there was me thinking the lumbar puncture would solve it all! The only slight light at the end of the tunnel I can see if that the jerks they thought was a form of epilepsy ends up being due to MS I might be able to get my driving licence back! And it would be great to be able to get some proper treatment!
This seems like a really good forum, just reading through other peoples’ stories has helped me, and just knowing there is some support out there is nice.
I was dx with ME at first. The ME specialist sent me for a brain MRI which showed ‘bright spots’. I was dx with MS after a positive lumbar puncture. A year or so later dx with PPMS.
Looking back I realised I had been having mild symptoms for about 10 years.
This is a great place to be for advice and friendship. Plenty of support on here. Don’t know what I’d do without it.
Hi Sarah. Welcome to the board. I was diagnosed with Myasthenia Gravis for a year before some of my symptoms didn’t fit the diagnosis. Was referred to Neuro and diagnosed with MS. Hope you get a firm diagnosis soon and get started on some sort of treatment.
Thank you for your replies, as I’ve said I don’t have a formal diagnosis yet but one of the things the neuro said before I left hospital was that neuro rehab and physio might help me walk - do any of you know if these are helpful in MS? I haven’t yet been referred for either of these.