Hi I was wondering if any of you were diagnosed without visible brain lesiond, and if so how was your diagnosis determined? Kaz x
It’s possible to be diagnosed with only spinal lesions and, in some cases, no lesions at all, because MS is ultimately a clinical diagnosis meaning that, if the symptoms and signs point to MS and other possibilities have been ruled out, it can be diagnosed. The McDonald criteria state that MRI and LPs aren’t necessary to diagnose MS, but that caution should be used if they are done and they are negative - in these cases, the neuro should be extra sure that it is MS before diagnosing. I would say that it is highly unlikely for someone with RRMS to have no visible lesions on MRI (brain or spine), especially nowadays with how good MRI is, but it is not so unlikely in PPMS because progression works on a smaller scale which isn’t easy to see on MRI. The likelihood of only spinal cord lesions is relatively high though - I’ve read before that it could be up to 20/25%. Karen x
i only have 2 on my brain and 2 smaller areas.none on my spine a year ago but having another on the 21st to see if any changes.if i have anymore he will diagnose me.if i havent i guess they are waiting for more to develop.i understand your frustration in this what they call limbo period.
Yesterday I went to pick my little one up from school and got stuck!my legs stopped working!they just wouldn’t move!frozen!it was like trying to walk in glue.it was like the bottoms weren’t there.clearly the signals from my brain weren’t getting through.two people held me up but I ended up pulling one of them over when I fainted!wheelchaired into the doctors next door.laughing now he never checked my pulse,blood pressure temp!did the neuro test and faxed the neuro!no point in going into local hospital as no specialists in neuro.passed from pillar to post for a year!at the onset of this I fell over all the time.had periods where I could only walk holding onto people,furniture.sticks.my legs have been so weak that I found it very difficult to move them.but never have they just not moved.I had to be carried into bed and have been here ever since!this has been the scariest ever.I am hoping I was affected by the heat and I can walk today as it looks cooler.but 20 degrees is hardly tropical I lay in 35 two years ago!!grrrr rant over!tx
Thank you so much Karen. That’s a really helpful reply.
I can’t thank you enough for your advice over the last couple of days. It has made things much clearer for me.
You are very welcome Kx
Hi Kaz, I was diagnosed without an MRI - I had a CT scan, an LP and EPs done. Also I had a thorough clinical exam done. Teresa xx
I was diagnosed with only spinal lesions too. Also failed my VEP test after a previous bout of optic neuritis. My neuro was great and very thorough in his clinical exam. I was then referred to an ms specialist after diagnosis but was told that a lumber puncture need only be performed as a last resort. Luckily ( if that’s the right word) I didn’t need one to confirm diagnosis. C xx
Thanks guys, I really appreciate the feedback xx