AFO? Ampyra? Cane?

[book lover]

Not sure which forum to ask this, hope this is okay.

I am confused as to whether it is necessary to use all of these walking aids.

I have been using a cane; my dr prescribed an AFO and told me to think about taking Ampyra (he also gave me some literature) and we would talk about it at my next visit.

When I was at the orthotist the other day, he said that with the brace he is making I might not need a cane. He was pretty arrogant so I was not sure if he felt he made a better device than others or that the brace might really prevent me from tripping and falling.

Does anyone use all three aids? two of them? I would prefer not taking more medication (for each symptom I have the dr is prescribing medicine) if it is not absolutely necessary. I will talk to my dr at my next visit in 3 months but wondering what others do.

[22cyclist]

I have used all three and still use my AFO, my walker, but not the Ampyra anymore. I stopped it because it didn't help me that much. I never could walk alone with it. Many people can, it increases their step speed. Not mine, so see ya later. I also cannot walk alone with just my AFO, but I have some severe balance problems.

I wish you better help with the three of these. The combination should assist one in walking much a better, and being able to drop the cane, but that is an individual thing.

Good luck and let us know how it goes.

Lisa

[misslux]

I use an AFO, rollator and take 4-AP.

I think that your PT is best to assess whether you need to continue using a cane once you get your AFO.

[PositiveMS]

?

Reading this post and wondering what an AFO is.

[misslux]

Ankle foot orthotic (a.k.a., a brace)

[book lover]

Thank you

Thank you Lisa and Misslux.

I guess I won't feel like I failed if I still need the cane after getting the AFO! LOL. The orthotist made it sound like I should be able to throw it away.

I must say that since this is all so new to me it really helps to hear the experiences of others -- I am not one who likes surprises and can adjust to almost anything. If I need the cane so be it.

I will also listen to what the dr says about the Ampyra -- I am not opposed to taking it if it will keep me from falling or tripping but obviously would prefer less chemicals entering my body.

Once again, thank you.

[misslux]

If your insurance covers it, give Ampyra a shot.

I used to be opposed to meds before MS but am totally open to making life easier / feeling better with meds on top of maintaining a healthy diet and lifestyle.

Good luck!

[pshrink]

First off, allow for the fact that Ampyra/Fampyra is only really effective for about 9%-10% of those who try it. If a 1-in-10 chance of walking better sounds good to you, then give it a go. It was a free-trial for the first month, and if it works for you, then it is going to be something you want.

AFO (as a brace) I have never tried. But read on ...

I have a (left) dropped foot. I went from one cane to two, and a physiotherapist got me to try a 3-wheeled walker. When I go out, I also have a FES Stimulator to bring the foot up. With the FES and two canes I was getting around OK, but with an exaggerated swing on my left leg, and no consistency in the left heel strike (on which the FES relies). The trouble was run down to a dropped arch, and the orthotist at the same hospital got me some custom-made insoles which locate the heel correctly.

Now, with the insoles, the FES, and the 3-wheeled walker, I get around well. So well in fact that I bought a second walker (1 in house, 1 in car). So, yes, I'm using a 3-way combination (but not the one you asked about).

You cannot just assume that any combination of aids will work for you, and I would not believe that just one (any one) would have me walking normally again.

I know of several people who have tried using hiking poles in preference to canes. This does have you more upright, which eases the load on the hips. Two poles and an AFO might be the combination that works for you - and it might not. Anything that you can try for low cost (or for free) has got to be worth trying.

G

[04blackcobra]

I use all three. started with the ampyra for the fatigue and weakness in both legs and it works well for short periods. I can definitely tell when I miss a dose. I have a right foot drop and use a cane but I still hadto swing my right leg out or hop up to keep the toe from catching on the ground. The AFO hinged brace keeps my toes up now so that with all 3 I can get around well. I would like to try one of the electric stims for the foot drop but cost to much. Hope this helps

[misslux]

pshrink, what FES device do you have? I tried a Bioness a few years ago but it didn't engage during a step once and I tripped. It ended up freaking me out so I instead kept with an AFO.

[pshrink]

Hi misslux

I have an Odstock (OMS) Pace FES.
http://www.odstockmedical.com/about-fes
and I actually attend their head office at Salisbury District Hospital.
It was one of the technical people there who got me referred to their Orthotics Department to get my fallen arch/heel strike problem sorted.
I had had a very bad experience with a very bad orthotist previously, but these people really had it all together. They came up with a custom insole to get my foot in the right position and embedded the heel switch into the insole so that the heel strike was constant. This could have been your problem with the Bioness.
One side benefit of the insoles (yes, I actually have a pair) is that my feet do not hurt like they used to.
The only downside (for me) with the FES is that it adds about 15 minutes to getting dressed each day.
The combination of FES, orthotic insoles and a walker has got me more upright,walking nearer normally (with reasonable lower leg and ankle movement), and I am now good for 50 metres or more before I have to rest (and maybe 250-300 metres in total).

G

[Sir-Voor]

I have been on Ampyra for 4-years and I highly recommend trying it.
But I’m what I think they call a super-responder, so I may be a little bias. And FYI: it is not a DMD, it is purely a quality of life drug.

If your doctor is recommending it, then it should be safe. AI: no lasting side effects.
So if you do have any bad side effect they should stop would you stop taking Ampyra, or after you’re on it for a few weeks.

On the plus side you could respond or be a super responder, and you could literally and up dancing with joy. FYI: walking is the only thing the company can legally clam it helps, because it was the only thing they tested. For me it has helped my balance, numbness, brain fog, speech, and more.
My fatigue is much better, but not using energy keep my balance and becoming and staying more active is likely the cause of that.

What and if helps is as unique as MS is for each of us, and if it does not help at least you know you tried.

Good luck!

[misslux]

They came up with a custom insole to get my foot in the right position and embedded the heel switch into the insole so that the heel strike was constant. This could have been your problem with the Bioness.

Ah, that sounds like my issue as well. I'll think about looking into a FES again. They are pretty expensive and insurance doesn't like to pay for them. My current AFO is decent (Dynamic Walk) but definitely something to look at while I have supplemental that covers DME.

Thanks!

[book lover]

Thank you, thank you 22cyclist, misslux, pshrink, 04blackcobra, Sir-Voor

Thank you all -- it is greatly appreciated. I am willing and am planning on trying everything and anything my drs recommend, especially when it comes to improving my walking.

You have all confirmed what I think I knew and have given me the extra confidence to not only try various treatments/aids but also not to get discouraged if I still need the cane or that something does not work.

Misslux, like you I have always tried not to take meds but know that some are necessary even when we have a healthy lifestyle and diet.

Pshrink - As far as the statistics re Ampyra, I figure that I could just as easily be in that 9-10% group who it works for - I am an ovarian cancer survivor (1 in 72 lifetime risk of getting) and now also ms (no immediate member of my family with ms so a 1 in 750 chance) so one in ten seems like something to try as long as the side effects are not too serious!

It's interesting that you mentioned the FES - the rehab dr who has me getting an AFO talked about the FES but felt that right now my ankle is too weak - she is afraid that I could easily break my ankle. She suggested starting with the AFO and with pt try to strengthen my ankle and hip and perhaps consider it down the road.

Your story really made me realize how I have to try everything and find what works for me. I understand that it is complicated and one aid/medication may not do the trick.

I do have hiking sticks and ski poles and will consider using the sticks especially when we want to try hiking or walking in the woods. Since my left hip is also very weak I think that the hiking sticks, as you mentioned, by making me more upright will also make it easier for me to walk more than 100 steps.

04blackcobra - I like the idea that ampyra helps you with fatigue as well as walking. I have left foot drop and, like you, have been swinging my leg out or walking more on my right toe.

By the way, right now most insurance companies will not pay for the electric stims but my dr said they are working on getting it covered. Hopefully that will occur soon.

Once again, thank you all. This site is great -- so many people who are knowledgeable, helpful and willing to share their experiences. It makes a somewhat overwhelming dx easier to accept and deal with when you know you are not alone and are given advice to help you make important medical decisions.

[misslux]

Good luck and I hope you find a good combo that works for you.