Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Hi Debbie The drug itself has the side effects of giving seizures to those that take it - so it makes sense that they're witholding on that basis alone if you are liable to have seizures anyway. The drug also can help people who are already walking as they've said. If you're no longer able to stand or walk, this drug won't have the best results and so they're less likely to give it to you. It's not good, but irreperable damage can't be healed or helped by the drug to the best of my knowledge. Sorry to be direct about it hun - I hate 'MS' and the system which keeps us all locked in the boxes it/they keeps/keep us in. Have you looked into CCSVI? 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: buttonsndough@... Date: Sat, 4 Sep 2010 09:41:35 -0700 Subject: Ampyra I have been trying to get on Ampyra for a while now but my insurance company keeps turning me down because I can not walk 25' and I am at risk for seizures. I have been so upset for it my understanding that this is what this drug is for to help MS patients, progressive MS patients walk again. But according to there rules they want you to be able to already walking. Makes not sense to me at all. I have been in a wheel chair now for 2+ years and I can stand I wobble and it gets worse the longer I stand then my legs give out. I can take maybe 2 very sad steps with help on a good day. Why not let me try? They put this drug out advertise it to help Progressive MS patients who get very little help to begin with, get there hopes all up and when they get to the doctors office and want to get on the drug on hopes to have kind of life back, we get smacked in the face with only certain patients are gong to be allowed to take the drug. Has anyone else faced this problem? How did you handle it? Did you eventually get on Ampyra? I want to try Ampyra so badly, I want to see if it will help me. The first time I heard anything about it was on the Today Show and Meredith was doing an interview with a lady who had Progressive MS, she had not walked in several years and she started taking Ampyra and was not walking just like any regular person. Now why would they put that on national TV a woman who could not walk and she took Ampyra and is not walking? Then say you have to be able to walk 25' before the insurance will cover it? Very confusing to me. Maybe someone can make some sense of it all and help me understand. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 hey all, my doc just prescribed ampyra, which she says is an improved 4AP. any comments on this? haven't started it yet as am working on getting rid of my hip spasticity--consequence of some pretty bad burns on my thighs 7 weeks ago after a run in with a cup of boiling tea. it's pretty horrendous, despite being a purist am forced to gobble baclofen just to be able to sleep. am doing yoga, sauna, weight bearing stretches throughout the day, staying on my diet, etc. but this stuff just seems to be getting worse. any suggestions? am getting kind of desperate here. the pain is unbelievable, and i'm a pretty tough cookie. also, maya, frequent small bouts of exercise throughout the day help my circulation immensely. aviva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Hi Aviva As you probably know from my previous rants and responses regarding BIG Pharm's drugs, I don't touch them. I know it has 'helped' some and is as usual, a personal choice in regards to whether or not one chooses to use it. I've done some resarch on it and the possible side effects aren't anything I'd like to chance. It can cause seizures and as I've had grand mal seizures before ending up with me in a coma, I balked at the idea of taking anything which had even half a chance of bringing on seizures. I feel sure that you'll look further into it, will see the side effects ('possible' side effects sorry!) and be able to make your decision about how YOU feel about it. 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: tsavka68@... Date: Wed, 19 Jan 2011 09:35:45 -0800 Subject: ampyra hey all, my doc just prescribed ampyra, which she says is an improved 4AP. any comments on this? haven't started it yet as am working on getting rid of my hip spasticity Quote Link to comment Share on other sites More sharing options...
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