Hi All, first post. Diagnosed 2014 primary progressive, struggling bit more now but im managing. Tried fampridine, made me a lot worse, wanted to try one tablet a day, doc say No.
Get oxygen therapy every week at least. Has anyone tried Kinetic Chain Release?
My leg, i wear an AFO brace which sort of helps me, least a can still drive, my car is my my lifeline.
Hi there
I got diagnosed in 2021 but had MS for about the same length of time as you, just misdiagnosed before that. I’m the same: when driving, I’m normal. It’s an auto, I wouldn’t manage a manual any more due to the state of my left leg.
Had to look up AFO - didn’t recognise it. By coincidence I have a phone consult with the Rehab Unit on Monday to look at FES and other options.
Graeme
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Hi Greame,
Ahh Got it Functional electrical stimulation, might look into that option to help me walk better. My AFO is basically a lightweight carbon fibre leg brace. Were all looking for other treatments to try, was even looking at hrt or testosterone, i know completely crazy!
Waiting for another physio referal letter, but they are busy people. Have you ever heard of a techno gym? There’s a mini one close to me, i have saw them with over 10 pieces of gym equipment designed for us non athletes in mind.
Bear with me i took a picture of the afo. It’s way better then the ankle thing i used before.
Yeah diagnosed in 2014, thinking back little hints noticed probably noticed in 1989 hindsight’s great if your not 19 lol
AFOdriver
Hi AfoDriver
Just read your post and Graeme’s (GCCK), and thought I’d say… I’ve had FES for my right leg for around 12 months now and I absolutely love it, the mobility it gives me is incredible, I feel quite ‘normal’ at times ha ha! I sometimes struggle when it’s really hot as the electrode gel patches don’t seem to work as well in heat, but it’s a real lifesaver in my opinion!
If you do look into it I hope it works well for you both, all the best!
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Had my consult with the rehab physio and she’s referred me to orthotics for AFO and also for FES. Waiting list for FES could be 18 months though. She also cast doubt on whether either approach would work for me as I have significant lymphedema (lower leg, ankles & feet swelling) and the electrical signals might not get through and the swelling might make fitting an AFO problematic. Oh well, we’ll see…
Hi BlinkingMs
Great your FES is helping you move about better, can you drive with it on though? I don’t fancy having to chop and change from car to walking modes.
And cckk or Greame
I’d remind you i’ve had to buy my shoes a size bigger as the afo raises your toes up in your shoes, so your normal size will be a little uncomfortable.
Where do i buy an FES from and are they sore when working 
AFOdriver
Hopefully FESdriver???
Hi AFODriver
You’re not going to like this …sorry). Unfortunately I’m no longer able to drive, my right leg just seizes up or spasms without warning so it’s not safe for me to be behind the wheel as I can’t control the accelerator. I can only speak for myself so I’m not saying a FES means YOU wouldn’t be able to drive… I really don’t know I’m afraid.
The FES I have is from the NHS and I was referred by my Neurologist. I’m advised by my neurophysiotherapist that there is a much more ‘technical’ Bluetooth one ( I think), which can be set up by the physiotherapist specifically for the individual, just once I think, and removes the manual set up I do each time I use it. I think it’s around £2500.00 to buy, or was when I looked. It looks awesome but I don’t have the money at this point and I’ve got everything sorted easily enough now I’m used to it.
When the sensor is activated I do feel a sharp stimulation in the nerves and the power of it is something I adjust myself depending upon how much ‘help’ I need to lift my foot/leg on a given day.
Definitely worth exploring I’d say.
Good luck guys, Anita
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There is no problem driving with FES and you can pause it, or just turn it off, if you prefer.
Your GP can refer you for FES assessment and it is possible to get one on the NHS, depending on funding being available.
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Brilliant news, just hope i can wear one under my jeans. As for turning it off when i’m or if i’m driving’s, not a good idea my AFO stops my lead foot sinking. Thanks for all your insights and options peoples, i’m away to drive the furthest i’ve driven for many years soon enough, so there will be no time to track down an FES in a month, it’s ok i have cruise control for the motorway driving.
Thanks again for ALL your help
AFOdriver (Scott)
Hi, @BlinkingMS
Doing ok with my AFO just now. Glad your FES is helping you. 
Just getting to grips with this site, been chatting with the bots, and they don’t understand us humans 
@BlinkingMS
Take it your blinking don’t mean flashy lights 
Hi AFODriver
I’m giggling re the flashy lights and oh yes, you are correct, I wanted to use something v v different but I don’t use bad words ha ha so thought blinking was more appropriate
So pleased you’re sorted out. That’s great!!
I know what you mean re the site, I’ve been looking on it for some time but not commenting until recently but I don’t feel I understand just how it works yet…… and to prove that I had responded on my email but now realise I need to sign in and reply on here . Oh dear technophobe strikes again
Take care, Anita
Hi @BlinkingMS
Yes your right you can’t reply via emails, it’s a lot safer.
Prove us wrong and earn yourself a badge
Here’s my chat sand script with the trainer bots
Look below
AFOdriver