Hi There,
Just wondered if there’s any good advice please. My position is I am not formally diagnosed but over the past 3 years have had 3 abnormal MRIs (with no change), and I think I meet all the criteria for a diagnosis. The neurologist however, says that because I have only had evidence of one attack (brain and spine lesions) that although I have probable progressive MS there is nothing to gain from a formal diagnosis now so am being monitored every 6 months.
Although I have right side weakness and muscle tightness etc, my main problem is footrop and my ankle doesn’t work for which the physio gave me a brace (to my knee), although this helps it is uncomfortable. I have heard about the silicone AFO but it is very expensive and I did briefly try the (like the tens , I have temporarily forgotton the name of it - another sympton heh!). I have noticed now that my foot is turning out and I am walking with my weight on the right of my foot and I wondered if a Podiatrist would help and whether you can get orthotics on the National Health? Does anyone out there have a similar problem and what is the solution? I would try and get the SAFO but am worried that it cost a lot and then if it doesn’t work, it’s money wasted.
Thanks for listening and have a good evening!
Amy
I wear a foot splint all the time. One is called ‘Toe Off’ the other was made my the team at the hospital after I was measured for it. Wearing it stops me tripping and falling but now I have no movement in my ankle at all. I get physiotherapy every couple of months and exercises to help. Go for it. Look up Toe Off on the Internet. It is expensive but you might get one on the NHS. Good luck
Hello Amy,
Footdrop, I’ve got it but yours sounds different. Basically my left foot gets very tired and I cannot pick it up when walking so I fall over a lot. I bought a MuSmate. It is an elastic arrangement that lifts the foot off the ground as you swing it forward, It has given me whole new lease of life. Go to www.musmate.co.uk.
I have written an article about it on my website http://www.aid4disabled.com/musmate/
I’m not saying it is right but worth a look.
Also take a look at the MS blog of Prof Giovannoni at http://multiple-sclerosis-research.blogspot.co.uk/ and do a search on Famprdine. There are a lot of articles
Good luck,
Patrick
My orthotist made me a cheaper versoin of the SAFO, via the NHS. One advantage of a diagnosis could be that you will (or should) gain access to these services on the NHS. At the moment I am using the Foot-up device a lot, and haven’t tried the SAFO as I only got it last week, and need to practise with it. I also have an FES which is good but not so suitable for the frequent get up and move about and sit downa again as I do at work, as the cosntant switching it on and off would be a disadvantage.
Hope you get sorted
B x
l have had a SAFO for over 5yrs. lts brilliant - so comfy - fits in all shoes. Tried the Toe-off and the FES - but the SAFO is far superior. The orthotist at the local hospital introduced me to it. l did have to pay for mine - but l think you might be able to get one on the NHS now - l know they are available for children on the nhs.l see someone has already replied who got hers through the nhs. They are so hard wearing - and l find after taking it off my foot ‘remembers’ to keep in position for quite a while afterwards.
Also Clarks Wave shoes are very good for keeping your foot in a good position - the shape of the sole rocks the foot - similar to the mbt’s [masai barefoot technology] and the SAFO fits nicely into them. Clarks online no p&p and free returns.
F.