Last week I had a ‘whole of spine’ MRI, I was in the machine for 2 hours!! As I had it done without and then with contrast.
I am ‘still’ undx, (now over 6 years). My neuro, (who has in the past told me my condition derives from my spine, and he thinks I have 3 different condtiions going on, but he can’t fathom them out. Previous MRI in 2008/2010 (brain & C spine negative, LP negative), can’t find whats wrong!!
So he referred me to a different neuro, this new neuro is higher up in the medical ranks and is an MS specialist. He was very thourough, did a full thourough neuro exam, (much more than I’ve ever had with my original neuro) and ordred a whole of spine MRI with and without contrast. (he said a brain MRI wasn’t needed)
I’ve read, (written by a radiographer) that the only reason contrast is ordered on the spine is either looking for MS or tumour. (I don’t think I have a tumour as after 6 years, I think things would be very different!) So he’s obviously still searching for MS. I have the symptoms of progressive MS. I don’t have relapses.
Has anyone just got spinal lesions and have a had a long haul to get dx’d? I personally am still convinced it is PPMS.
And has anyone had whole of spine MRI? It doesn’t seem that common!
I’ve had all the usual chat from the neuros. i.e. we may never find out whats wrong, I don’t think it’s MS (even though he’s written evidence of MS on my notes). etc…
I’ve had a full spinal scan before, but it was in my pre-MS days (a loooooooooooooong time ago!) when MRI was in its infancy. It felt like I was in there for about a week! I fell asleep several times
It sounds really promising that they’ve referred you to one of the top bods. Fingers crossed you finally get some answers at last!
HI your situation sounds like Polls (Boudica). Loads of clear scans and LPs. She was initially dx with PPMS because they could not find anything else. Then she was told it was not PPMS but spastic parathesis cause unknown. Are you symptoms only in the legs ?
Yes, I am similar to Poll in some ways, spoken to her a few times about it. I also have spastic paraparesis in my legs. But my symptom list is huge! And not just my legs sadly. Mine stared with pins and needles in my fingers back in 2007, that stayed for 2 years. (residue sensations stayed) I have terrible fatigue (which actually is my worst symptom as it’s made me give up work and basically can’t do a lot now!) Had many symptoms over the years, some have stayed, some come and go. Had one sided headache for 9 months! Neuro told me its a migraine! But I know it wasn’t, felt much more like TN, GP agrees. And I’m getting weaker now. My left arm struggles picking things up! Plus lots more…
I wish they could just give me, and other in limbo, an answer!! It’s so frustrating!
Hi Jules, I am in limbo too. I do have a cervical spine lesion but as it is the only one and I have a clear LP so MS cannot be dx. I did however have radiation treatment for cancer in 1990 and they think that may be the cause. One consultant thinks it is but another thinks that theory in impossible. To be honest I think that it is the radiation. My main problem is spasticity in right leg and slight fatigue. I hope that you do get answers very soon.
