I went to dorset orthopaedics and got fitted for a SAFO. I get it next week. While there he suggested that I try lycra shorts for the spasticity in my quads. They are supposed to help with proprioception etc.
The firm that do it are called DM orthopaedics. They gave me the name of the local firm who measure up. I rang them but they said that I need a referral from NHS as the garments are very expensive.
On another point. As you know I have no DX yet although the radiation I had has been suggested. Basically I have researched things that can cause slow neurological progression. The most obvious is PPMS, then there is sub-acute combined degeneration (B 12 defiency) and finally delayed radiation myelopathy. The second one is the only one that can be treated and since I dont necessarily tick all the boxes for the other two to get a confined DX, I have requested that I get the B12 jabs to see if they help.
Anyway I bought the B12 book!
B12 deficiency starts usually with fatigue. This then leads into peripheral neuropathy and then finally attacks the lateral/posteria column of the spinal cord showing up as hyper intensities on the T2 mri. A result of the latter is gait disturbance and spasticity.
Well… I was first investigated for fatigue in 1999 (thyroid levels checked yearly). In 2005 first attack of neuropathy (clear mri). 2008 another neuropathy attack. 2011 spasticity and scan showing lesion in posteria column of spinal cord. Neuro checked B12 issues and as they were low I was given monthly B12 injections. He said this was nothing to do with the lesion.
Now over the summer I was away and missed the B12 injections for several months. I then started to get problems with my arm. The arm issue had been going on for several weeks and stopped the day after I got the B12! This is the trigger that got me thinking and go me to order the book.
I also found that the treatment when neurological damage has been done is
1000ug injection of B12 daily for 4 weeks. Then weekly for a year and then monthly after that.
I have asked my GP for this and I want to do the injections myself. He wont give it to me without neuro approval which will be difficult when neuro disagrees. I want to give this treatment a go as I have nothing to loose and it will do no harm.
I feel frustrated.