Magoo,
I'm really glad you posted on this issue. And I appreciate where you are coming from with the post so no apologies necessary.
This got a very good discussion going. I'm going back and forth about fampridine so all of the posts are very helpful.
I'm on Tysabri so I am well aware of the irony with FDA approval of "safe" drugs. FDA approval is very into the pathology of physiology rather than treatment. We need them to speed up the treatment processing.
Bird Poison okay...but we need to be cautious with CCSVI???
-
mhawks1990
- Getting to Know You...
- Posts: 10
- Joined: Mon Feb 15, 2010 3:00 pm
- Location: Texas
- Contact:
I really like this topic. I know all drugs have risks but I have been counting the days until I am able to get it. Im willing to take the chance because I want to walk better. If I got scanned and had CCSVI I would more than likely have the procedure. That's why I love this website-so much info and views. It is awesome!
people do not seem to realize that the drug trials are being lead by doctors who are affiliated with the drug companies in some way. on top of that some of the some drug companies go as far as performing the drug trials themselves then report to the FDA. so of course the bias results are going to be positive. just look at all the videos on youtube pertaining to big pharma's corruption and how they control the FDA.
wake up people and stop being so nieve.
secondly i am having a very difficult time comprehending why trials need to be held for CCSVI. when an artery is blocked a stent is inserted. simple so it would only make sense that when a major vein is blocked it also is corrected. whether this is the cause of ms or not is irrelavent at this point. if they want to research CCSVI in the mean time to see if it is related to ms not a problem but lets call a spade a spade. this is only a stall tactic.
wake up people and stop being so nieve.
secondly i am having a very difficult time comprehending why trials need to be held for CCSVI. when an artery is blocked a stent is inserted. simple so it would only make sense that when a major vein is blocked it also is corrected. whether this is the cause of ms or not is irrelavent at this point. if they want to research CCSVI in the mean time to see if it is related to ms not a problem but lets call a spade a spade. this is only a stall tactic.
Last edited by markus77 on Tue Feb 23, 2010 10:38 am, edited 2 times in total.
STAY REAL MY FRIENDS
dx 1989, spms
dx 1989, spms
Where we all can find people to talk to. Doctors? No the talk and listening only for 10-15 min.
On ThisisMS we are learning a lot. After L’s quote I will give it a try to get of the aminopyridine-4 (a poison
). Looking forward to a day to live without medications.
I think this is a great topic,
Thank you L and Magoo,
V,
On ThisisMS we are learning a lot. After L’s quote I will give it a try to get of the aminopyridine-4 (a poison
). Looking forward to a day to live without medications.I think this is a great topic,
Thank you L and Magoo,
V,
My sister recently sent me an e-mail about Ampyra at the urging of her gentleman friend. This was my reply:
"Hi _____, Thanks for sending this. Yes, I've known about it and have considered it for special occasion use. Before Ampyra, 4-ampyridine (a potassium channel blocker) was a drug available by prescription only from compounding pharmacies. One dose was only effective for a few to several hours. Ampyra is a slow-release formulation that may even things out for MSers who use it. Since your reminder, I've reviewed the information about 4-ampyridine again. I still feel the same about it---okay for special occasion use. It has some pretty nasty side effects like dizziness, fatigue, nausea, cramps, kidney damage, seizures, etc. Actually, it's a poison for killing birds and fish, and it can kill humans too at a high-enough dosage. Apparently, there is a fine line between a dosage that is strong enough to actually help and a dosage that puts you in the danger zone for seizures and the other side effects. The most widely experienced side effect is the cramping---not surprising when you remember that it's a potassium channel blocker. Also, most MSers who use 4-ap need to use larger doses over time to get the same effect.
Like just about everything else I've looked into inre MS, it's a double-edged sword. Still, I'll keep it in my mental "bag of [potential] tricks" for times the need may arise. I thought about it for the girls' weddings, but Steve walked the aisle OK both times."
"Hi _____, Thanks for sending this. Yes, I've known about it and have considered it for special occasion use. Before Ampyra, 4-ampyridine (a potassium channel blocker) was a drug available by prescription only from compounding pharmacies. One dose was only effective for a few to several hours. Ampyra is a slow-release formulation that may even things out for MSers who use it. Since your reminder, I've reviewed the information about 4-ampyridine again. I still feel the same about it---okay for special occasion use. It has some pretty nasty side effects like dizziness, fatigue, nausea, cramps, kidney damage, seizures, etc. Actually, it's a poison for killing birds and fish, and it can kill humans too at a high-enough dosage. Apparently, there is a fine line between a dosage that is strong enough to actually help and a dosage that puts you in the danger zone for seizures and the other side effects. The most widely experienced side effect is the cramping---not surprising when you remember that it's a potassium channel blocker. Also, most MSers who use 4-ap need to use larger doses over time to get the same effect.
Like just about everything else I've looked into inre MS, it's a double-edged sword. Still, I'll keep it in my mental "bag of [potential] tricks" for times the need may arise. I thought about it for the girls' weddings, but Steve walked the aisle OK both times."
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."