Hi Everyone
Got a letter today from the neuro squad - LP showed evidence of oligloclonal bands, but MRI of brain showed no lesions/inflammation, apart from the evidence from a 10 year old stroke (hey - happy birthday!!). Obviously they no longer consider it to be MS, more like a one-off, but what the hell can cause symptoms like these for 10 months??? Happy, but not exactly delighted.
Neuro will see me again next month for my follow up, but really …is there any point?
Ali x
Yes, there’s a point in going, if only to have the positive LP explained.
But the other thing I would be asking is, “What about my spine?” Your brain MRI may have been clear, but can they really rule out MS without scanning both the cervical and thoracic spine? Anything up to 20% of people with MS only have lesions in their spine. That positive LP means that they should take you seriously.
One off attacks can cause symptoms that last a long time (sometimes permanently) so a 10 months duration doesn’t really narrow things down 
If your symptoms are stable or improving, then it’s probably going to be a “wait and see” situation (depending on spinal MRI). If your symptoms are worsening, then you really should push for the spinal MRI.
Karen x
Thanks Karen
Have already had a spinal MRI - which showed ‘evidence’ of inflammation of spinal cord. All my symptoms are consistent with MS - pyramidal weakness, gait problems, fatigue, sensory problems, sore feet, imbalance…
Everything I have read about MS, I can recognise from my own problems. I guess you are right - I’m in for the waiting game.
Ali x
Ah! So a CIS, clinically isolated syndrome. It’s definitely worth keeping the appointment. For a start, you need someone to review/prescribe your meds and GP’s are not exactly brilliant at this, but it’s also usually better to be “on the books” of a neuro so you can get an appointment sooner rather than later IF you have another attack.
Ask about an MS nurse when you’re there too, especially if the neuro wants to discharge you. It’s still possible that your symptoms will improve, but if they don’t, you may need ongoing help with meds.
Kx
Thanks Karen - So it’s a CIS. Always nice to be given a name!
My GP prescribed only Amitryptline when it all started. Neuro has not prescribed anything at all.
Have left a message with his secretary asking about meds, and will be speaking to Occ Health later today.
Work want me back, but Occ Health said before xmas that I coudn’t go back until I’d got a diagnosis.
Feeling very miffed as it doesn’t look like an immediate diagnosis is forthcoming. Am now on ‘half pay’ and getting no answers from anybody.
Again, Thank you very much for your help! I really appreciate it.
Ali x