I wait! I want patient history.
I am like Pam, I will wait a little while. Best of luck with the Provigil. I took it for four years. Did a body good for a while. I soon became amune to it. Took two pills a day, started out taking half a pill twice a day. Ended up taking two pills twice a day, it stopped working, my nuero said that would happen evidenually. Best of luck with it though. The new med sounds good, but I will wait a while. My nuero is not easily impressed, which has worked in my favor. I want to try the new med, but...I do not know just yet! Walking and faique are my worst MS problems.
sherry/smomdukes
I tend to know about drugs before they hit the market, but that's just because I do so much research and writing for the MS community at large. Even staying active in the blogosphere and on twitter, I hear the "daily news" before it airs on the evening news.
But when it comes to new medications which I might consider using personally, it's a different story. I tend to learn as much as I can and then ask my neurologist or nurse practitioner their opinion on the treatment. This is how I knew about Rituxan and later talked to my rheumatologist and neurologist about using it.
I researched Rituxan and read the published studies in MS and RA; I asked questions while in the midst of a relapse; I presented information and asked my rheumy about using it; she talked to my neurologist who said YES!.....and then we made the final decision. I prefer working as a team member but ultimately trust the advice and knowledge of my doctors.
I have two reactions. One reserved for new drugs in general and another reaction entirely if that drug happens to be a new oral drug. (I hate needles and have been waiting for an oral drug this past decade.)
I get excited once an oral drug has FDA approval. Then I start researching in earnest because I want to be able to switch to it.
A new drug in general doesn't excite me as much, I am willing to wait for time to past to learn about all of the side effects and and benefits.
I would like to know if it improves anything other than slow walking? I've walked this way for about 14 years now and it's never really been something that bothered me. It's kinda just how I roll!!
I found an article titled "Acorda-therapeutics ms drug ampyra could stumble" that was less enthusiastic about it than most.
It will be interesting to see if our Nuerologists start recommending it.
Upon reading your post, I immediately went to my own personal clip..muchlike the one you describe. The bottom line (for me) is to first set the anxiousness asside and tryto be objective in my analysis. Will it really help? I don't want anymore 30% drugs like Avonex. What are the side effects? Is the benefit worth the cost? Speaking of costs, will insurance pay for it? Will new drug compliment what currently take?
The clip in my head makes me want to latch-on to everything that comes along....I have learned that "everything is not for everbody". Yeah, it does get personal.
Great post
So, I went to see Dr. Aaron Miller yesterday for my 3 month check up. And with this post in mind I asked him a few questions about the new drug de jour for MS.
• I asked him how patients tolerate it, and he said very well. If you have a history of seizures, it can spark more,I don't.
•I asked him what about this whole... "it helps with walking" thing. How can it just select that one symptom? He said it can help with more than that, but walking is the symptom that was definitive in their testing. He also explained to me that the symptom of walking is geared more to weakness that inhibits walking. For me it is balance and foot drop.
• I asked how long must I take it before I see the results. He said a few weeks and if you haven't seen any effect you can stop it.
My feelings are: What have I got to lose?
I'll report on my experience~
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I also have to reign myself in when a med medication comes down the pipe. Which sends me on a research free-for-all. Like my Provigil. I know it works for me. They have a new version out. Checking myself over.. the Provigil has returned me to pre-MS energy levels. I will stay with it until the evidence of it being an improvement becomes overwhelming or the Provigil either stops efficacy or they find it causes fingers to sprout out of your chin.
LOL... If it aint broke, don't fix it. Glad it is working for you... thanks for your response.
ag