I’m a lucky guy Fampridine works for me
Who is the lucky owner?
I take Fampridine and use a Functional Electrical Stimulator (FES), they both improve my quality of life. None the less I can only walk with a rollator so progress is slow. Without their combined benefits I would have to use a wheelchair. The walking problems are caused by bad drop foot and drop leg in my left leg but my right leg is fine.
Fampridine and FES
MS prevents many nervous impulses stimulating the muscles. Fampridine is a neuro functional enabler, this makes it easier for messages to pass along the nerves to the muscles. but it only works for about a third of the people who try it. The FES is a clever device. As you walk it sends an electrical signal to the muscles to reduce foot drop and leg drop. Without either walking is very difficult.
I am a frequent faller
In 2013 I was told to use a 4 wheeled rollator or walker because my sense of balance is not good. I received an FES in 2014 and three years later I started using fampridine. Nonetheless I still have to use a rollator otherwise I fall over.
Life does not stand still
Queen square wanted to check if Fampridine was still an effective drug for me and made walking easier. The first stage, called a washout or a drug holiday, is to stop taking the drug for two weeks then the clinic times me to walk 25 feet. This is known as the times 25 foot walk (T25FW. Now start taking the drug again and after 2 weeks I repeat the T25FW. The times are compared, after the holiday I should to be about 20 -30 per cent faster if the drug is effective
Begin the drug holiday
As soon as I stopped fampridine my life became much more difficult. What little balance I possessed disappeared without trace. Any elegance I might have had when sitting down also flew out of the window. I became even more dis-coordinated and clumsy. I could not lift my leg off the ground at all.
Time to go up to Queen square and do the T25FW My legs failed to function and the short walk took me over 30 seconds. I really struggled.
Now I restart fampridine
I had to prove that the drug significantly improved my walking speed if I was going to continue with the fampridine. Serious training will now be necessary.
The house is long and narrow with a flat walk of about 60 feet between the front and back doors. Every day I practised walking. From front door to back door then back to the front. Maybe as much as 30 times a day. Cautious optimism as the walking became easier and faster. Not quite so clumsy either. I felt more alert and even start joking with The Wife
2 weeks of fampridine
Back up to Queen square and it’s time to measure my new walking speed. I complete the ‘Timed 25 Foot Walk’ in 18 seconds. That is over a third off my time without Fampridine. I totally smashed it.
Yup I’m a lucky guy in some ways but there was an enormous amount of training and practise. Even though Fampridine works for me I’ve still got MS but now life is a wee bit more bearable.
November 2020
My MS clock has gone back a couple of years
I Have Been Living with Multiple Sclerosis Since 1972
So good to read your positive experience with medical grade cannabis. I plan to try some too. I too have advanced MS and have struggled to get any treatment as I am wheelchair bound. However Fampridine does work for me , the rest of my body needs it, and this I feel very strongly. So once again it is bought privately. I’ve recently started HRT patches at 65 , titrations them to my bodily needs, and it does make a difference. I find that German female doctors are the most sympathetic and are the ones to ask. Older English female Doctors are a hard bunch in my experience. Good to meet you Patrick.
Hello Jenny,
Good to meet you as well.
Cannabis and Fampridine both help. The effect is as if my MS has retreated and I have now have control over parts of my life that were dominated by MS
That’s the ONLY way to deal with life. . . .
Just concentrate on the good stuff.
I’m lucky that I got a referral to Queens Square that provided me with the FES and Fampridine. That has enabled to concentrate on the good stuff that I can still do and enjoy