My MS clock has gone back a couple of years
No more easy pickings now
I started taking Fampridine just over a couple of weeks ago. Yes, YEs, YES it really has worked. Right now I’m not too sure if my walking speed has increased sufficiently to receive the drug beyond the trial period. That it will be a bummer. Put walking speed to one side then so many other things in my life have improved. It’s as if my MS clock has gone back a couple of years.
So what has changed
My legs are stronger; I can now do things in Pilates that were totally impossible last month. No I’m not going to be discharged as ‘fully fit’ but it’s a new me. Sense of balance, wow. I can now stand on my feet and not hold onto anything and gently turn my shoulders from side to side. Now I can look at the ceiling and then the floor without using anything for support. I had to stop these exercises several months ago.
Sense of feeling
The numbness in my fingertips has virtually disappeared. I can easily do up shirt buttons. I can stand up unsupported while I brush my teeth or butter some toast. That might not mean much to you but to me it’s wonderful.
Start of the day
Now when I wake up in the mornings there is no stiffness in my legs I’m not saying I can bounce out of bed like a spring lamb but everything suddenly feels so much easier. I can feel the tips of my toes. I can move my left leg, the one with foot drop, when lying in bed. The treacle I lived in from the waist down has suddenly got runnier.
Has my walking speed improved?
So I’m not too sure if I am any quicker but I am more stable. The baseline test before starting Fampridine using a zimmer frame with two wheels for the timed 25 foot walk took me 29.5 seconds. I loathe the zimmer frame, it is so clunky and it limits my walking speed. I know my walking speed with the Rollator would have improved.
Workman blames his tools
There is a finite maximum speed for me using a zimmer frame. It is used by fragile elderly people who walk very slowly. Not for a 62-year-old young whippersnapper wanting to walk a bit faster.
My MS clock has gone back a couple of years
The benefits of Fampridine kicked in within a day of starting the pills. I reckon the full benefits took about a week to take effect One thing unchanged though is my hyper extending knee. I know this will affect my maximum walking speed.
Some things don’t change
Double vision is still there. I still find it difficult to give a straight answer to a simple question. My brain might not be in a thick fog but my answers certainly are. Also I seem to get physically tired more quickly. Even so my MS clock has gone back a couple of years.
Somehow I must learn to walk quicker with that wretched zimmer frame. Time to go off and do some more practice.
December 2017
SO PLEASED FOR YOU HPPY CHRISTMAS Fiona
Sounds really encouraging – can’t remember is it Primary Progressive MS
Hello,
Its SPMS. Yup really hopeful that I will get the nod to continue
Congratulations!!!! Amazing!!! Exciting!!! Not to put a damper on anything, but have you had any side effects? How did you obtain Fampradine? I live in the UK. Many thanks. May you and yours have a Happy Christmas and a beautiful New Year.
Hello,
I think the only side effect has been feeling a bit dizzy when I get up from the bed or chair suddenly. Just got to hope that I pass the walking test.
The idea of Fampradine was suggested to me by a physiotherapist at the National Hospital for Neurology and Neurosurgery in Queens square, London. I’m not too sure what the situation is in other parts of the country. If you get a chance do give it a try.
I wasn’t sure if my walking speed had improved either. The difference I noticed first was getting up from the chair without pulling myself up with the frame, suddenly I just stood up! When I went back to NHNN after 2 weeks my speed had improved by over 70% !!
Hello,
That is really good news, 70% improvement on your walking speed. Not too sure I will match that but it’s the improvement to the quality of my life that has amazed me.
I will be up at Queens square tomorrow so let’s see how things go.
Sounds very encouraging – can’t remember is it Primary Progressive MS