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fampridine - Interesting Info

Hi folks,

I dont have an MS dx but it could be on the cards. Anyway I have an issue with the spinal cord causing walking problems and my neuro let me try fampridine. Unfortunately it didnt work.

I have had a long chat with my physio and after seeing many folk try fampridine she has come up with the following:

People with MS have walking problems due to :

a) Leg weakness (muscles not getting enough nerve impulse - lesion stops/prevents impulses getting down the cord)

b) spasticity/increased tone (One of the functions of the spinal cord is to dampen down impulses sent from the brain. If a lesion has caused this function to fail then the muscle will get too much impulse and be fired up too much)

c) combination of both (Some muscles get too much others too little).

Fampridine works by increasing the signal sent from the brain down the spinal cord. You dont need to be a scientist to work out what will happen. The weak muscles will get more impulse and get stronger BUT the spastic ones will also get even more and be fired up even more.

25% -30% of people with MS have walking problems due to weakness only (no spasticity) and will benefit from the drug.

If you just have spasticity then the drug will make your walking worse.

If you have both then one will counteract the other and you will probably notice no difference.

I thought it all made sence.

Moyna xxx

Moyna

Thank you, that’s kind of calmed me a little as I don’t think it would help me (so now I won’t waste time/energy & small hopes on it!). That sounds like the best explanation of how it works, that I’ve heard yet.

Some of my problem seems to be weakness yes, but the spasticity is crazy, I’d kind of forgotten how bad it was… I weaned off Baclofen and had nothing at the weekend, if I stretched in bed my right leg would start juddering like crazy!

Started Tizanidine now, so will see how it goes.

Sonia xx

Hi, I have both spasticity and weakness. I have now been taking Fampridine for about ten days. I’m starting to have more strength in my legs…still wobbling around but can manage indoors without my stick…especially during the middle of the day. However I have to say that spasticity has improved considerably already! Not too sure how that fits in with your neuro physios theory though Moyna? At this point though I have to say the improvements really don’t warrant £192 a month. Biggest problem , for me, so far is that I’ve been lying awake until about three in the morning…this turns me into quite the most horrible Nina you can possibly imagine!! My MS nurse has had several patients who have had enormous improvement with fatigue…to be honest this was the thing that was of most interest to me…as yet I’ve noticed little, if any improvement with fatigue. As I’ve had MS for about 40 years I consider myself lucky as far as my walking is concerned …I’ve got used to it and really the progression regarding walking has been minimal…I’m ultra wobbly …very very stiff…use a chair to go out. However unlike fatigue it doesn’t ruin my life. So unless over the next week or so I see an improvement in fatigue levels I don’t think I shall continue after the end of the free trial. Having said that…it’s really very hard to judge as I’m lying awake for half the night! Bit of a chicken and egg situation! Sorry for the epic post …thought it may be of interest to anyone considering trying the test. Very best wishes, Nina

Don’t be sorry Nina, it’s interesting to know how people react with it. Let’s face it, if you don’t try it you’ll never really know.

I can now go back on my “if things get really desperate” list! :wink:

Sonia x

Hi thanks for replies and dont be sorry Nina. In my situation I have 90% spasticity and 10% weakness. The spasticity in my case is really increased tone as opposed to spasms. When on the Fampaya my leg was as stiff as I steel rod - even the physio couldnt release my quads to bend my knee - rigamortis had set in!

I really think the drug company should explain exactly what walking problems they solve. Walking is complex many many factors are involved.

The next things to try are lycra, sativex and FES which can be used to reduce tone.

Moyna xxx

Hi, Actually I should have been a little more precise re spasticity…my legs are normally very up and down but since starting fampyra they seem to be a little better…however my main spasticity problem is my back…like a very painful iron rod most days…but typically some days not too bad. This hasn’t improved at all. Contrary Mary!! Moyna, Have tried sativex on a private script…for me nowhere near as good as the real Mcoy! FES would not be a help at all as it’s my back that is worse than my legs but what is the Lycra thing please! Sonia , Definitely worth putting on your" if things get desperate list…we are all so different. Aside from the cost I just don’t see the point of putting even more nasty chemicals into our bodies if it isn’t a big help…having said that I’d be more or less prepared to try anything…well almost anything! Have recently been offered faith healing! Made the excuse that I didn’t want to confuse the issue whilst trying the fampyra…but really would love to hear anyone’s opinion. Find the idea a tad freaky but then the guy is offering it free of charge so maybe I’m being silly? All the touchy feelie stuff…never been comfortable even with an aromatherapy massage! Nina x

Hi Nina, Lycra leggings for spasticity. I think the company is called MD orthotics. They also do lycra body suits etc They are used a lot for children with spastic CP.

Moyna xxx

Moyna thank you for that, you’ve explained really well why I’m struggling with a hyper sensitive body. You’ve also made me understand that that’s a drug for me to cross off my “potential help” drugs.

Please don’t apologise for long posts everyone. It’s easier to read something longer that’s explained well than something short that either uses text speech or is only understood by people who have experienced whatever is being discussed. Maybe I’m a bit slow but this forum has taught me a lot more about MS than my nurse training and subsequent reading has done.

Take care and wrap up everyone.

Cath xx

Nina, thank you :slight_smile:

Yes, I’m sure Sativex is not as good as the real thing but that’s part of the problem for me… trying to remains bright eyed & bushy tailed when I’m at work! All these meds seem to have drowsy as no.1 side effect, on top of fatigue it’s just ridiculous.

Moyna, stretching my quads is horrible and I dread to think what they’d be like worse so you have my utmost sympathy… I am still waiting for my rehab and my neuro said he’d chase it for me.

Just in case I’m not back later… hope you all have a fab weekend

Sonia x