NeuroTalk Support Groups - Do The MS Drugs Really Work? .No!

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- - Do The MS Drugs Really Work? .No! (https://www.neurotalk.org/multiple-sclerosis/127804-ms-drugs.html)

Quote:

Originally Posted by Erin524 (Post 674410)

I'd rather get a Rx for LDN (seriously! someone give me a Rx for LDN!!!) or have someone stick balloons into my jugular vein. I wont be surprised if it turns out that MS is caused by vascular problems. (there's probably a neurological component too)

I PM'ed you, Erin, if you want the name and number of a doctor who will do a phone consult and prescribe LDN. I'll be happy to share it with you of you want it.

Quote:

Originally Posted by Koala77 (Post 674485)

So, for those who believe their medications are helping, I truly am happy for you. I just happen to believe that DMDs for MS don't work, and that any apparent improvement for those using them is simply the natural progression of the disease.

You definitely could be correct but as someone who has seen just how nasty MS can get I am just not willing to take that chance. I don't believe Copaxone has really shown to cause long term damage so I am comfortable taking the chance that it will help me.

I personally don't care if it is the placebo effect, my natural progression or the medication. I need to continue working and so far so good.

So true, Jules. :) A lot of people think that LDN is just the placibo effect. After 7 years of stability and feeling better, I don't care if it's the magic fairy. I'm gonna keep chewin while the flavor lasts..:D:cool:

Quote:

Originally Posted by SallyC (Post 674492)

This is what I believe.....especially since I went 17 years, after DX, without an exacerbation and stayed stable for all that time, with NO MEDS at all.

My neurologist won't make the diagnosis of MS despite everything I have and all the other doctors' opinions and diagnoses. I have asked him many times if I am being "damaged more" by not being diagnosed and not being on MS meds. He tells me that the meds are very dangerous and that he prefers to use them on only serious cases. I guess the question is, are you a serious case because you don't get the meds. Everything is a mystery.

Quote:

Originally Posted by lyndarva (Post 676999)

I would not continue to see this doctor without at least consulting a MS specialist for a second opinion. :confused2:

LOL - I think you should "keep chewin while the flavor lasts". I also think many others should also. I have done my research on LDN and I do NOT see a placebo effect among long time users.

I know it is in the best interest of pharmaceutical companies to keep LDN off the US market and as such we see. I also know it is not in the best financial interest of many neuros to prescribe such. IE - mine has his own clinic and could lose many IV monthly MS patients... I know my contracted amount and that loss of many would bring a major MS Sp of the SE down.

I remain with my current drug due to choice - belief -- fear ... I believe I have the best approved drug, but do I have the best drug. My own goverment blocks me from choice.

I've been diagnosed with MS for a little over 20 years now. I tried Avonex for one year, but then got to where the needle began to look like a railroad spike and I just couldn't do it anymore.

I was on Copaxone for five years, but starting to get worse.

I was on Betaseron for three years, and began going downhill faster and faster.

I am now on Tysabri, and have just had my 11th infusion. My last MRI came back with no changes. I get mild flares, especially with the heat we've been having, but my general overall MS symptoms have remained the same. I've stopped the downhill slide, have had no side effects, and I'm happy to go in every four weeks for the infusions.

If Tysabri stops working for me, I will discontinue it.

I'm also thinking about trying to find a new neurologist. The neuro who started me on Tysabri moved out of town in January. I've only seen this new one twice, and I'm his only patient taking Tysabri--which I thought was odd. I asked him why, and he mumbled something which I cannot remember. I hate to change neurologists, especially this quickly--and his office is five minutes from my house--but I most likely will be doing just that.

I think Tysabri is providing the drug for me. Sorry, but my brain has turned to mush and I have a hard time remembering things! :):(:mad: