Walking difficulties with AMN: Has anyone tried... - AMN EASIER

AMN EASIER

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Walking difficulties with AMN

Lexington40 profile image

Has anyone tried MS medications to help walking difficulties with female carriers?

10 Replies

Only a minute I was going to ask the same question! :) As Ampyra (Fampyra/Fampridine) improves 25% MS sufferers’ walk. Sadly NICE (UK) got rid of it in England in 2018. Still available in Wales and Scotland. Another reason to move… 😆. I seem to remember some gents here are on Ampyra? I’d love to hear.

I don't really think walking issues are gender specific. Like monmon says, Ampyra certainly works (for plenty of people, including me).

Best of luck getting prescribed it, it costs a fortune. A lot of people simply buy 4-AP. Same chemical, quick release.

healthunlocked.com/amneasie...

4-AP kept me walking for nigh on a decade. Don't go out much now, I work from home, but whenever I have a big day planned it never fails me.

Thank you. I’ll be seeing a Mayo Clinic, Rochester, Minnesota, neurologist soon. I will share info after.

Thank you 😊

I may be able to add something here.

I was able to get Ampyra (dalfampridine) starting in September 2020. I'm in the US and bypassed insurance (exorbitantly priced) and got it through GoodRx. It was about $55 last year then increased to around $80 this year for a 30 day supply.

At first I was pretty excited about it, as starting it coincided with some measurable breakthroughs I was having in PT with gait training, particularly in speed and mechanics/flow. Not any kind of miracle drug, but seemed to be helpful. Although, I did not note any improvement in balance as I had been hoping.

Over the course of this year, I became less certain of the benefits. There have been times when I was not able to keep the speed and flow that I had gained in the fall. After a succession of walks that did not feel good at all, I decided to go off of it. This was a little over a month ago. I can't say that I have noticed any major difference since stopping it.

I am now wondering if the improvement I experienced in September was just coincidental or if my brain and body did their thing and found a way to bypass or compensate around the benefit I was experiencing. I've noticed that with various vitamins/supplements as well as some diet changes.

I'm going to see how things go for a bit. I did not experience any side effects (after getting used to its initial impact on my sleeping) but there are concerns with the medication, specifically seizure and kidney issues. Also, I will add that Dr. Fatemi at KKI (during one of those zoom meetings) was particularly doubtful of its benefits. He questions the validity of the original research data and stresses that it in no way operates on the mechanics of our disorder. (To be honest, that wouldn't have made that much difference to me, if I was sure the stuff actually helped.)

I'll keep you posted if anything changes. Wish I had something better to report!

Catherine

Thank you 😊

It doesn't work for even all MS patients. No hard and fast rules when it comes to spasticity. I find that with any of these drugs I have to give my body a rest every week or so.

That notwithstanding, 4-AP works exceedingly well for me. I just wish more AMN people had access to as many medications as MS folks. We'd have bigger sample sizes in that case.

Hi i m french, here Health care isnurance is free 100% AMN SEP. I m 100 % caring about traintements of my Addison disease an ANM and séances Kinétherapie. i tried Fampyra , i stoped, i hafmost bad effects, a friend of my too ,she has SEP. Baclophéne 60mg per day. Some times i m missing last ,I m taking in fact 40 mg per day. The séances kinétherapie help me a lot. Exercises at home. When is paint full my back ,and butt I take Ketofrene ,ans Paracetamol . I m luky i mcan work again I ll change the job.Cuz i walked a lot in the last job im nurse. The new , i ll visit the patients at home and clinics, for médical beds , walkstik ECT

Lexington40 profile image
Lexington40 in reply to Tellio

Thank you 😊

On ALD connect for symptomatic females Dr Koehler said that MS medications don't work for us

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