I'm considering discontinuing taking it...my foot is dragging more again, and I'm not walking as well as I was...I was hoping that the med had taken time to find itself, as many on other boards who take it have found...they have a reduction in effectiveness after being on it a couple of weeks, then it begins working again. This hasn't happened for me yet...I noticed it stopped working about 1 1/2weeks ago, and thought I would see the rebound already.:(

The headaches and sore throat are not fun either:( Neither is the upset tummy

I had an appt with my Neuro Monday and she told me about Ampyra ER since it was now available. She is not pushing but wanted me to know about it. I told her I would check it out on the Internet and NT and see what people were saying.

I have been having the "rare" reactions to meds recently and such a bad experience with Avonex that I really don't want to go on anything again.

She is also concerned about trying anything new since I had the outbreak of skin cancers. We both pretty much agreed to just continue to treat my symptoms as we have done for the last 18 years.

I hope it helps Eddie and those of you that are going to try it. I will keep checking on the thread to see how you all are doing. :hug:

Well I took it once per day for a few and today started taking it 2x. No sore throat. Only sore throat was first night I took it with my other handfull of nightly meds and it stopped dead in my throat! Scrathced it but no problems since the morning after. If any of you stop it please let me know if you're worse off then pre ampyra.

I have been on Ampyra for almost 2 months now, and have noticed that when it wears off, I am very aware, my legs become weak, I become clumsy, and my coordination is not good.. and when it wears off, my body is definitely worse feeling then it was when I began ampyra. Yesterday am I took a pill and havent since and am very uncomfortable with how my body feels right now.. It is tight and weak and slightly spastic in my legs.. very disturbing to think this may not wear off.. I am not sure what to do. Do I stay off for a bit and see how my body responds? Is it simply going through a 'withdrawl' of sorts?
Anyway, thought I would share this..

I haven't heard any really possitive reports about the efficacy of this drug. so far.:(

Anyone else?

Welcome to NeuroTalk, Claire. :)

Quick reply - Im doing good so far. Strength is there but I use Testosterone inj. slightly high dose 100mg every 7 days. No sensory help from Ampyra at all. will be getting doppler n MRV in couple weeks. Praying I have narrowed vein or art (ccsvi).

I am ampyra user
 

I have been taking AMPYRE for 2 weeks. Tried all the other DMD for multiple sclerosis, all with troubling adverse reactions. This being a neuron potassium channel blocker, that is now FDA approved. After using other meds, not approved with NO positive effects. I wanted this one. I BELIEVE that nothing good comes surpressing the immune system.

I still have MS, I still catheterize 6-8 times a day. When I forget I will be incontinent. I still use a wheelchair, it is just alot faster getting to one place. I am exercising to strenthen the legs&the core muscles.

Had this disease since, 1979. It is going to take some time to get ambulating how I use to,which time and patience I WILL obtain my goal.

Good wishes for you (((((Vane)))))

Let us know how this treatment helps and works for you.

What ampyra has done for me
 

Cleared up my head. I can put together my thoughts and speak them so I can be understood. Tolerate the summer tempertures, keep the ac set @73degrees and still be able to physically function. Take a shower indepentently, with my shower bench. Able to walk short distances with walker. Less spasms, I only need baclofen 10mg 3x's a day. I do not fall out of my chair because of them, that happened frequentley before Ampyra. I feel like I have a purpose being alive.

I highly recommend this medication. I take one 10mg tab every 12hrs. I will give Fampridine-SR after FDAapproval. Once a day is better than twice a day. No negetive side effects for me.

Love to hear other experiences with it.


Sincerely,

Vanessa Rorison

As far as spasms go for me, Ampyra sure didn't reduce them. They're still terrible. Forgot to take my morning Baclofen 40mg (120 per day) and holy bleep. I took them throughout the day and were still bad even when I went to bed.

Sensory is still going downhill.

Strength is there but I have to hand it to testosterone (80-100mg week) & daily exercises including swimming.

I can't recommend Ampyra as of now over cheap testosterone. Everyone's MS is different though so try it..maybe?
If something improves strength by jumpering nerves, why doesn't it improve sensory??? I don't understand this one.