How's everyone doing on Ampyra?

[CasinoKathy]

To GinnyRuth

I'm sorry that your ins. says they won't cover Ampyra for you! Hopefully that will change.

I have not had any side effects from it and it sure has given my weak leg more strength. Have noticed alot of small improvements too!

[GinnyRuth]

I'm sorry that your ins. says they won't cover Ampyra for you! Hopefully that will change.

I have not had any side effects from it and it sure has given my weak leg more strength. Have noticed alot of small improvements too!

Hey, with MS even a small improvement is very welcomed! Glad you are still doing good.

[schnick]

I just received my 1st shipment. I'm a little anxious about taking it, but from the sounds of it, what do I have to lose? I'll let everyone know how it goes.

[bubbadan]

Ampyra

I started taking Ampyra on July the 29th and have not seen any improvement so far, but I have been introduced to some of the side effects that are not very pleasant. So I decided to try cutting the dosage down to 1 pill per day to see if that will help. I have high hopes that this drug will help enough so that I can walk with my cane once again. I wish everyone the best of luck while being on Ampyra.

[bucky1]

I started off with 2 pills per day from the start. I felt walking improvment after the first pill. I am SPMS and needed a cane in the house and a scooter outside. Now I can walk outside on my yard. I have not been able to do this for 3 years! I have not had any side effect after 2 months on the drug. I have not spoked to my doctor since starting the drug. I am working out 3 times a week and want to suprise the docto by walking in to my apointment this November unassisted. WOW WHAT A DRUG!!!!

[tejokid]

I started a couple of weeks ago and didn't notice anything immediately. Since then, little improvements have been accumulating, sort of like compounded interest

I wish I had thought of it when I first started taking it, but yesterday I handed DH a yardstick and asked him to measure how high I could lift my bad foot off the floor. Doubt that it would have been over an inch or two when I started, but he said it's 6 inches, wobbling briefly up to 7. So I've got a baseline now--I hope future yardstick measurements are even better.

There have been other things too--I'm better able to get through tasks without going weak and butter-kneed right away. It even seems like the neurons in the cranium are firing a little better--how I have missed my brain!

[dutchy79]

Today marks the 4th day on ampyra and until last night could not honestly say I felt any improvement. After taking my pill last night I started feeling "life" in my right foot. I could walk without the fear of stumbling or losing balance. I could actually jump a bit and dance around. I was soooooooo thankful and felt blessed.

It was a long haul for me to get the pill but feel it was so worth it. All I can say is be optimistic about this pill and patient. As someone earlier stated one doesn't realize the gains until you don't take Ampyra.

[CasinoKathy]

bucky1, tejokid,and dutchy79 -- Yea hahs to all of you! I'm glad your seeing improvements. What a great feeling it is to be able to lift a foot and or leg again!

bucky, wow, I'm really impressed with how good your doing, that's fantastic. You must be SO HAPPY!!

bubbadan, hope your side effects subside and you start to see some improvements!

schnick- good luck starting on the "walking pill", please let us know how your doing!

As for myself, so far this week, with the heat and humidity I haven't had many good moments. Even if I don't go outside in this awful weather, it seems to make me weak.

HOWEVER *****I woke up early this morning, must have had a feeling things would be different today, and boy, what as IMPROVEMENT!!!

I could actually vacuum ALL the floors at one time and had great balance. Didn't feel at all like I would tip over from lack of balance!! Just 2 days ago I vacuumed the dining room rug and it took me about 15 MINUTES! Had to vacuum with 1 hand on the vacuum while holding unto the table or a chair as I tried to move around.EEKE!! When I got done I wondered why I even tried!!

And after cleaning all the floors I went outside to sit at the table on the patio for while. Always take a cane with me. After about 20 minutes I thought I better come in and get some more work done since I was feeling so good. Went to grab the cane, and found out I hadn't even brought it out with me!

I noticed that my weaker foot was clearing the floor better and my walking was faster today than the last 4 days.

I TRUELY believe this is a MIRACLE DRUG for most of us. I have read that some folks don't notice even a slight improvement till after a month or two. As with all the meds we all respond differently, but I sure hope that everyone can experience some benefit from this drug.

Good luck to you all and have a wonderful weekend!! Kathy

[JMom]

bucky1, tejokid,and dutchy79 -- Yea hahs to all of you! I'm glad your seeing improvements. What a great feeling it is to be able to lift a foot and or leg again!

bucky, wow, I'm really impressed with how good your doing, that's fantastic. You must be SO HAPPY!!

bubbadan, hope your side effects subside and you start to see some improvements!

schnick- good luck starting on the "walking pill", please let us know how your doing!

As for myself, so far this week, with the heat and humidity I haven't had many good moments. Even if I don't go outside in this awful weather, it seems to make me weak.

HOWEVER *****I woke up early this morning, must have had a feeling things would be different today, and boy, what as IMPROVEMENT!!!

I could actually vacuum ALL the floors at one time and had great balance. Didn't feel at all like I would tip over from lack of balance!! Just 2 days ago I vacuumed the dining room rug and it took me about 15 MINUTES! Had to vacuum with 1 hand on the vacuum while holding unto the table or a chair as I tried to move around.EEKE!! When I got done I wondered why I even tried!!

And after cleaning all the floors I went outside to sit at the table on the patio for while. Always take a cane with me. After about 20 minutes I thought I better come in and get some more work done since I was feeling so good. Went to grab the cane, and found out I hadn't even brought it out with me!

I noticed that my weaker foot was clearing the floor better and my walking was faster today than the last 4 days.

I TRUELY believe this is a MIRACLE DRUG for most of us. I have read that some folks don't notice even a slight improvement till after a month or two. As with all the meds we all respond differently, but I sure hope that everyone can experience some benefit from this drug.

Good luck to you all and have a wonderful weekend!! Kathy

Good for you Kathy, so happy for you!!! I definitely think Ampyra helps, some days more than others. I won't go off it again!

[claudine]

I stopped Ampyra after 5 days

I had two difficult-to-deal-with side effects:
1- I felt lightheaded. It was worse when I had not eaten but taking it with a meal only helped temporarily.
2- I had insomnia which got worth every day. The last day I took it, I couldn't fall asleep until 3 am and still woke up at 5.

I couldn't bear all this and stopped taking the medication on Saturday. I'm calling my neurologist tomorrow morning.

I'm conflicted about this. On one hand, I had hoped to run and down the steps soon on the other, this is a new drug and who knows its impact on the long run.

I gave it a try and I'm at peace with that.

[ShockedToo]

I've been on Ampyra for 2 1/2 weeks now and I am not doing good. I don't know if it is the Ampyra or just the tremendous business stress that started around the same time. I am not sleeping very good, not getting around as well (I use a walker), and now for the last three days I either have a mild Bells Palsy or something from MS. I don't know what to do and am thinking of calling my neurologist in the AM and see what they say or even if I can get in on short notice. Bad thoughts in the brain, pray for me!

[rosepetals]

Finally some improvement

I may be at least I hope I am pulling out of the flair. I am doing better through the flair with ampyra than normal flairs. However my flair is complicated as I am very anemic, close to transfusion level and very low iron levels.

Yesterday I was able to move my toes and my walking is better today. I am still very weak and haven't been going out for regular walks. It's enough to do grocery shopping or simple errands and chores.

I am hoping the improvement continues. Currently I am taking one ampyra a day as my stomach feels like it has an ulcer from the steroids in Feb. and ampyra has added to the pain. Even baflocen hurts it. I am babying my stomach so I can take the iron pills. Currently most everything upsets it and causes pain.

I am still impressed with ampyra.

[Misplaced Texan]

Ampyra

I've been on Ampyra since April 22. I had excruciating pain in my knees and my hips so after a month I stopped taking it. My mobility became worse. One night I was on the living room floor all night until my husband came looking for me. (He went to bed before I did since I also suffer from insomnia.) I restarted the Ampyra the next day and my mobility is great. I still use a chair downstairs, but a walker upstairs. I'd rather live with the pain than spend my life on the floor and having my husband pick me up and putting me on a chair, the couch, the toilet. I have an independent personality. Oh, and the second time around, the pain is not as bad.

I wish you all luck - with or without Ampyra.

[LZMOM]

Amprya is a miracle!!

If you didn't know I had MS you wouldn't!! Very cool! I don't limp and don't seem to drag my left foot! (Like frankenstein)

I missed one dose from working late one day and it all came rushing back! But if I take as directed 1 every 12 hours I seem to be normal!

No one has asked me why I limp in the 3 weeks I have been on it. (Someone at work has asked me daily for 3 years. ) Most people are so into themselves I am sure they will forget I ever did soon if they haven't already! No one has noticed I no longer limp even though they haven't noticed I have stopped (work folks)

I love this stuff! I hope it lasts!!!!

[dann]

Reality

I have tried Ampyra with excitement - but, had to stop taking it. Almost like it awakened muscles in weak leg, then I got spasms that were so bad they would throw me if I did not have cane in hand! I have been off it for about 3 wks, spasms still there but getting weaker. So have hopes for next best thing..........whenever we get it!I always keep good spirits, though.......never give in..........