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Old 04-07-2011, 12:12 PM #11
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I hope your MRI goes well today and that some of these side effects will lessen as your body gets used to the medication.
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Old 04-07-2011, 07:00 PM #12
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My neuro ordered Ampyra for me too. He also ordered it for only once a day instead of the normal 2 x/day. I haven't gone through the process of getting the Ampyra filled because I'm not sure I want to try it due to the possible side effects. I'm already having quite a bit of pain in my thoracic spine area and my left hip and I'm scared of doing anything that could possibly make it worse. Hope your MRI goes well and your body starts adjusting to the Ampyra and it helps improve your walking without increasing your pain.
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Old 04-12-2011, 02:21 PM #13
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I missed an Ampyra dose yesterday morning and let me just say missing it made a HUGE difference. I fell a lot and my body is adjusting to the new med. I left a message for the neuro to find out when I should go up to two per day but have not heard back yet. The new neuro wants me to go to UCSF to work with a MS team now. I'll let u all know.
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Old 04-12-2011, 07:00 PM #14
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Wow Doc, so you found out, the hard way, that Amp. is working for you! I wonder if going up to 2 will help you even more or bring out the disturbing side effects?

Thanks for keeping us informed and the best of luck.
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Old 04-12-2011, 11:42 PM #15
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Thank you Sally. I wonder if it will. I called again today but we keep missing each other. I'll call at 9:00 when they open tomorrow and ask the questions I have and give him various times to try to contact me. Just need to make it happen.
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Old 04-13-2011, 05:24 PM #16
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Talked to new neuro he wants me to go to two Ampyra per day now and wants to send me to UCSF to work with an MS team and stop taking Copaxone. I'll probably talk to the team and Tysabri or Fingolimod and the Pharmacist at work just told me about laquimod so I'll ask about that too. Pro and con there I guess.
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Old 04-13-2011, 07:58 PM #17
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Laquinamod sound like another RRMS modulating drug, only oral. Hope it works for you.
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Old 04-13-2011, 09:28 PM #18
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Default Omg!

Is it possible to cut the dose in half and work your way up to a full dose?
I had to do that with a drug I was on because of the side effects.
I took half the amounts for a few weeks then 3/4 for a couple weeks then the whole amount. Worked out soooo much better for me.

WELCOME!
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Old 04-13-2011, 10:43 PM #19
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Welcome to NT...

I took Ampyra for a time. My neuro was one who did trials for it.
He suggested taking one dose in morning and one at about 2-3 pm even tho it's suggested to take it 12 hours apart. He told me why take it at night when you'll be asleep and not walking? He said one patient in the whole trial had a seizure from taking it this way...it was later reported that this patient had unreported epilepsy. He felt there was no danger in taking doses closer together.

Anyway , I tried it for two rounds...I got severe stomach pain & had to discontinue it despite my neuro's pleading to continue.
It did improve my gait, but wasn't worth the pain IMO.
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Old 04-14-2011, 03:15 AM #20
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Welcome to NeuroTalk DoctOr T. I hope your stay here will be enjoyable and informative. So sorry you're having those miserable side effects that so many of "our" drugs cause. Have you given any thought to LDN? It held my MS steady for many years with no side effects. However after dealing with this disease for thirty-five years, I'm spms and use a powerchair full time.

Good luck to you on this journey with MS -- and again, Welcome.
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