Hi all
This is my first post. I think my problems started about six or seven months ago, I became increasingly weak and wobbly in my legs. It felt very strange. Walking had been like breathing, I didn’t need to think about it, but suddenly I need to concentrate because my feet didn’t seem to know where they were going! I kept tripping, especially when walking on rough surfaces.
At first we put the problems down to spinal damage. I’d suffered a burst fracture of L4 about 18 months previously and it seemed reasonable to think the issues were related. I saw a spinal specialist and an MRI suggested some bony overgrowth and a prolapsed disc that he felf could be responsbile for the issues with walking. I was referred to a spinal surgeon and hoped a small op would put things right. Unfortunatley the spinal surgeon suspected a problem connected to my central nervous system and he referred me on to a neurologist.
I found the neurologist difficult to communicate with at the first appointment but he organised an MRI of my brain. This showed I had a large ‘hole’ that was filled with CSF. As it was ‘linked’ to the other lakes of CSF normally found in that region of the brain he didn’t feel the abnormality was causing any problems and suggested it may have been a problem I had been born with or a bleed I’d suffered during childhood.
The MRI didn’t show evidence of lesions usually associated with MS, although he agreed a lot of my symptoms were suggestive of MS. I am 56, much older than the usual MS age group at diagnosis.
He has referred me on to have various blood tests, a lumbar puncture and electical stimulation tests.
I told him I was desperate to have some treatment and to get back to normal. He looked at me and siad he understood but that presented two major problems. The first was that to treat me he needed a diagnosis and he might never get a diagnosis. The second was that even if he could treat me the treatment might not have any affect. I asked what he thought would happen and he told me that I had ‘progressive myelopathy’ that could result in the loss of any use in my legs. On the bright signs there were no neurological symptoms in my upper half so he thought that would be unaffected.
A couple of days later I saw my GP and he prescribed me steroids, just to see if they could help. Looking at the NICE guidelines I’ve realised the course he has given me - 60 mg per day for one week followed by 40 mg per day for a second week - is much lower than that recommended.
I feel so frustrated and so frightened.
Any ideas?
friday