Ever stop to think, and forget to start again???
How mild is your form of MS, Jim? I am not able to walk, I have bowel and bladder dysfunction, weakness in my arms and hands, some vision problems, some cognitive difficulties. I'm on Betaseron; if I hadn't gone on it 13 years ago, I very likely would not have been able to function at all. I don't know what neuro you're seeing -- all of the drugs have been shown to be effective, some more than others, and some VERY effective. He must not be current with the studies being done, not just by the drug companies (with a vested interest in their results!) but independent studies done by very reputable hospitals, like the Cleveland clinic, and so on.
Now, if you do have a form of MS that is "progressive", then inded the drugs won't be of much help. But they certainly have helped me, and most of the folks I know who have relapsing-remitting forms of MS.
Arggg….this whole insurance situation can be such a nightmare! I am so sorry to hear that you have to make this kind of decision. Just wanted to add that it appears that a generic version of Copaxone is in the works. I know this doesn’t help you right now, but just wanted to put it out there…
Post Edited (Sassafrass) : 5/23/2007 10:34:59 AM (GMT-6)
Hello Everyone- Been awhile, but I am still here and kicking! YAY...
Anyways, I have taken Betaseron, Copaxone, and Rebif... All of which I have reacted to poorly... Depression and extreme fatigue with Betaseron, Copaxone was clinically NOT effective, and Rebif did a number on my liver... That being said my options became limited. My neurologists offered extremely risky meds such as Tysabri and Chemo, as well as pulse steroids (which is shown to be ineffective as a primary tx of MS). Thinking my options over, I decided NO MEDS was RIGHT FOR ME. When I FINALLY was able to clearly state this to my primary neuro she responded with the research she was familiar with stating the the popular MS therapies are not as effective as they are made out to be. On average they have a 30% efficacy rate with decreased lesions seen on MRI. In real life, 1/3 of the people with MS have a "mild" or less active form of the disease to begin with... This makes me wonder even more if these EXPENSIVE therapies are even worth our time outside of the hope they provide.
On good days and bad days, good months and bad months, random MRI's ALWAYS show one or more active lesions! With medications and in a few months I will find out the results of MRI w/o medications.
If it is your choice to NOT take meds then more power to you. Feel comfortable and confident that you are making the right decision for YOU! MS will take its course. Period. There is no cure. The meds available might help to alter the course, but not stop it in its tracks. These are just 2 cents in the matter