sofia wrote:The neurologists keep saying that we should remain sceptical, as there has been so many promesing treatments the last 3 decades, and they all turned out to me ineffective when studied further.
I have been ill now for 8 years, and there has not been that many treatments that shows alot of promise, apart from Tysabri, and they are pushing that very hard.
I'm just wondering if anybody knows what treatments they are talking about. LDN has not shown any difference in results then placebo, my neuro is saying, so I suppose that is one possible treatment that has "failed" the test. But what are all the others? Different diets?
I'm not counting beestings, healing, reflexology, snakebites, foot-spas etc. I'm talking about different treatments and idea launched by professors and univerities, and well acknowledged hospitals and researchers around the world. Is there that many that has failed?
There have been several "promising" drugs which didn't make it through the required testing. Check Stu's MS News and Views for names. There are also several in various stages of testing right now which are showing promise.
For example, I am currently taking zenepax. Although I am not part of the clinical trial, so far the results of testing the drug are showing dramatically good results.
My experience, unlike the clinical trials, is anecdotal, but it is a GREAT drug - I have had substantial and sustained improvement. Unfortunately it is not going to be available much longer except for the clinical trials until the trials are completed.
The ABCR's are pretty recent drugs and they certainly have had a positive impact on MS for many people. Novantrone is another MS treatment drug with dramatically good results for many that has not been available for that long.
A friend of mine who died of MS complications a few years ago never had any treatment drugs because none were available. She got MS while in college and worked til normal retirement age, but for all those decades there was no treatment except steroids, which is certainly not a DMD.
Now there are a host of drugs which have been proven effective for at least some people with MS those are all prety recent with many more in various stages of testing. A whole lot of symptom drugs have been developed relatively recently.
Of course we should be skeptical of liberation procedures, but that does not mean we should not consider having the procedure. We are, in effect, acting as guinea pigs, but someone has to try new drugs/procedures, etc. to test efficacy and safety. Even if the procedure doesn't help me, I think having it will further knowledge for everyone about whether it is an effective and safe treatment.
So far taking drugs with risks has served me well. I am better off than I was 11 years ago. Each time I have to change drugs I dramatically backslide, but so far something has come along in time to reverse that decline back to an acceptable level of disability.
Your doctor sound awfully negative - the last 15 years has seen dramatic improvement in treatments for MS and they seem to be accelerating.