I have be under serious investigation since 2011. The first MRI came back with a clear brain MRI but a lesion seen on cervical cord. I was diagnosed with radiation myleopathy (from treatment in 1990). then in 2012 a brain lesion was seen so I had a LP which was clear. Didnt satisfy McDonald criteria so on a wait and see limbo stage. Spasticity getting slowly worse. No change in MRI in 2013 and 2014. In 2014 was given 3 month;y B12 injections for fatigue (my levels were just Ok). Early last year I asked if I could have then every week as they really helped me.
In January this year I saw a new neuro in London for another opinion and her has diagnosed me with MS and suggested I go on Tecidifera.
My home neuro s He sent me for an MRI in February and I managed to get results from GP and it states that there is now no abnormal signal on the spinal cord and the brain lesion has reduced in size. My question is āis this normal in MSā or could I have had Sub Acute degeneration due to B12 deficiency.
i have read in Sub acute degeneration mild symptoms happen before seen on MRI. (this was me in 2005 when I had numbness and MRI was clear). Also the spinal cord is effected first, then the brain - which was me. Also LP is negative for OCBs but elevated proteins indicating inflammation (me also). Finally intense treatment of B12 injections will resolve MRI appearance, although if treatment has been seriously late the there may be some irreversible nerve damage. ( Me also as foot drop remains but I have not got worse since the B12 injections.
Am seeing my neuro in a few months time and before I got these scan results I was going to ask for Tecidifera (as recommended by London neuro. Now I am not so sure.
The thing is I had one sort of attack in 2008 got better then from 2010 - 2014 I seemed to have very slow progressive disease which over the last year has kind of plateaued. I can still walk without a stick but have a pronounced limp/footdrop. I have no pain which is also unusual for MS.
So I dont think i fit into any MS mould.
I just wish there was a more definite test for MS then I would feel happy about taking a DMD!
Hi Moyna, I can see it is an uncertain time for you. I looked at the NHS pages for footdrop and there are quite a few conditions that causes it including diabetes.
Have you seen an MS specialist neuro? My past experience with five different general neuros over the years Iāve had MS is they have quite limited knowledge of MS.
Thanks Lenny, I have seen good MS neuros - been always told I am an unusual case ! I was happy with the diagnosis but with this MRI scan clearing/resolving then I am not so sure ! Definately not diabetes though.
Lesions can come and go. My neuro gave an introduction to MS at a public talk at the hospital /university and showed a sequence where Lesions appared and disappeared. I guess that illustrates what they are writing about on the Barts blog when they write of a need to rescan after starting DMT to ārebaselineā. I guess lesions appearing shows an attack and them disappearing is repair. Though MS repair is not āgood as newā so better to stop them appearingā¦
Youāve had such a time of it, waiting to get a diagnosis that you could trust. And no sooner do you get a āreliableā MS diagnosis but itās snatched away from you.
Theres nothing more I can say really except to offer my sympathies. Maybe when you do see your neuro he can explain things clearly (hopefully).
As you know, I was diagnosed with PPMS but was referredā¦ and ended up going the Tecfidera route. Iām pretty sure my neuro will take me off it in the summer as I have worsened on the mobility/fatigue front. Let me know if you decide to go that route as Iāve worked things out and I rarely flush noticeably and donāt seem to have any other issues with it
I think I only managed to get it as thereās no real test for PPMS vs. RRMS and the Tec choice was the gentlest. The more weird bits I remember from years ago make me think I might have PRMS - who knows?!
I canāt imagine how frustrated you must get with it hun