Lycra Leggings/shorts for Spasticity

Primary progressive MS
1

Hi All,

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.

Moyna xxx

2

Hi Moyna, I’m so glad you are getting this seen to. I know Vit B12 deficiency can be awful… in fact isn’t it also known as pernicious anemia? Very serious condition with terrible symptoms.

Good luck with it hon.

Hmmm wouldn’t want to see myself in lycra leggings or shorts… good Lord! Hate to think what I would look like! I like to wear loose clothing that hide a mulititude of sins…

Let us know how it goes and if things improve after the injections… fingers crossed for you Moyna.

Pat x

3

Moyna I’m glad you’re thinking everything through. Have you had an LP? I only ask because it was that that gave me my dx. I was really struggling, MRI’s showed brain lesions which wasn’t enough either. It’s not great having ppms confirmed but a relief at the same time.

I’m with you on the lycra Pat. I really would look like a stack of tyres. They’d be ideal as a base layer instead of my thermals but just don’t know if I could do that to myself. My poor body doesn’t like the cold. Hhhmmmmmm…

I’ll consider it, take care.

Cath xx

4

Hi Cath, the LP was clear, as is brain scan. The lycra would go under trousers ot skirts etc … I hope anyway.

Thanks Pat, you can have B12 issues without the pernious anemia.

Moyna xxx

5

Thanks Moyna. I hope they get you a dx soon. It took them 2 1/2 years to get mine and it was a really stressful and difficult process for me, my family and friends. I hope that they can correct your vitamin deficiency and your symptoms will ease off. You’ve made me want to see my gp and get my vitamin levels checked as I don’t think they’ve ever done them. Take care and good luck with your treatment.

Cath xx