I posted last July to say that the area of high signal on my June '13 MRI had resolved. The previous signs of cord atrophy had also resolved and the cord now appeared as normal size. I was so pleased when the consultant told me this and we had champagne to celebrate. This scan had been compared with the MRi done in March '12. A scan done privately in 2011 showed the same atrophy and high signal.
I have been seeing two consultants the first (private) thinks delayed radiation myelopathy (from trearment in 1990) the second (NHS) suspected MS. Anyway following the scan in June '13 the NHS consultant said I must have had an isolated attack which has resolved. But lately I have been feeling worse and went back to private neuro and we repeated the scan last week. The results came back and the lesion and cord atrophy are back !
Now the thing is that I had infusions of a drug called avastin in Dec/Jan '13 which are supposed to benefit radiation myelopathy. I had to pay myself (£6000). The drug stays in your system 6 months - I know this as the side effect of night sweats disappeared after 6 months. Could this have worked and the problem reappeared when drug wore off OR were they reporting on the wrong scan.
I am lost big time. The cancer specialist who gave me the radiation say that delayed radiation myelopathy is impossible for mantle radiation, yet a neurologist thinks that is were my problem is. I am lost depressed, ill, immobile and confused.