Hi, I am in the process of being diagnosed with MS. I have been referred from one neurologist to a MS specialist Neurologist. Apart from lots of symptoms I have 2 lesions on my thoracic spine and have positive oligoclonal bands in my csf.
i don’t have any lesions on my brain. I know it is possible to have spinal MS but haven’t found anyone with it. Did any of you start with spinal MS and did brain lesion come later?
Are there any other diseases that have spinal lesions, oligoclonal bands as well as lots of numbness, footdrop, pins and needles, weak arms and legs ect? Thanks.
My first MS attack came with spinal lesions and positive O bands in CSF. At the time they boldly declared that I didn’t have MS. (But that was in the bad old days before DMDs so it didn’t do me any more damage than knowing would have.)
Brain lesions did come later with MS relapses over time. If the MS specialist is prepared to call it MS then you are eligible for DMDs and so may never get the sort of damage that gives you brain lesions. Well at least let’s hope so anyway.
As far as telling you what else you could have instead … that’s going to be impossible. There are just too many things that can go wrong with the nervous system. It sounds to me like you’re going to have to wait for the appointment with the MS specialist. Have you been given any idea how long it’ll take for the referral? Maybe you can chase up the hospital appointments team?
Thanks Sue and Paolo, it shouldn’t be to long before I see the specialist and I am hoping he won’t make me wait for treatment. Even if I could get some steroids to slow things down. Waiting is the hardest thing especially when all the Neuros go on long holidays over Christmas.
Wat Paolo said is absolutely true. Relapses do not always = lesions. And lesions do not always = noticeable relapses.
So clinical experience of relapses ought to be sufficient to diagnose MS and once you add in positive O bands and spinal lesions it does seem to equal MS. It did in the case of the original neurologist.
So the sooner you see the MS specialist and get started on a DMD the better.
With regard to steroids, you could probably get some now. Effectively you have a diagnosis of MS, so your GP should be able to prescribe. However, high dose steroids are not a) a cure for relapses, b) without their side effects and c) much use weeks or months after the relapse started. So if your relapse started a few months ago, steroids aren’t going to be much help. All they’d probably do is stop you sleeping, make you clean your house much better than normal (due to the fact that there’s a certain ‘can’t sit still itis’ about steroids) and make you feel like crap.
So my earlier advice remains the same, get your appointment moved up if you can and get on a DMD. Paolo will advise you to start Tecfidera, and he’s probably right, but in the meantime, start looking at your DMD options: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/m…