NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - I am P***ED! (https://www.neurotalk.org/multiple-sclerosis/146600-am-ed.html)

Let's face it, Big Pharma has a lot of our Docs fooled too. They mean well, but, what ever happened to "first do no harm"?

It's especially nifty for the drug companies that whenever a patient complains that the DMD wasn't doing any good, they can say, "Ah, but you have no idea how much worse your MS would be if you hadn't been taking that DMD!":confused:

I've told my neuro that I'll be willing to go back on Copaxone if the MRI next December shows that the MS has worsened considerably since going off it (May 2010).

But when I said that I'd forgotten about the left groin pain attacks I used to have while on Copaxone. They were really crippling. I'm very glad to be rid of them.

Not to mention the bowel urgency problem, which was getting severe. Or the permanent lipoatrophy dents.

Amen to that! I told my MD the ONLY reason I was agreeing to this latest MRI was to show him that the Copaxone did NOTHING! for me other than drain my wallet. If the MRI shows no changes, no new lesions and so forth, it will be a long time before he can get me back in the machine, let alone get me on another DMD. I was just so sick, and they kept singing the same song. "just think how much worse you would feel without it!" and "you never know if THIS relapse that we just prevented, was the one that would finally take your eye sight." Scare tactics!

Thanks for the rant space. :cool:

Let's just say that I'm not unconvinced that the trials and and effecacy findings of the ABCRS were skewed and twisted to show possitive results, when there were none.

MS remits, remisses, progresses and doesn't progress on it's own and everyone is different. Some peeps progress fast, some slow, some get lesions, some don't, at speeds personal to each or at least to each group.

It would be easy to say that the old DMD worked for some and not others...KWIM? It musta been the kickapoo juice..:rolleyes::D:p Bahhh!

Ask yourself this question before taking meds like Tysabri, Gilenya and some Chemo drugs....Is the taking of a, possibly, life threatening drug worth the risk to, possibly, "treat" a disease that isn't??

I know that I feel better on Copaxone but when I tried the other meds they made me feel worse. If they all did that I would NOT be taking them. I feel better on Copaxone and my MRI's and exams prove that I'm better too. Sometimes diet and exercise is better than meds. :grouphug:

That is so true, Wiz and that's why I didn't include the ABCRs in my question. I took Avonex for 7 months and believe it helped me but, couldn't live with the horrible sides.:eek: I then took Copaxone for almost a year, but it did nothing for me and I progressed from RR TO SPMS.

None of the MS meds are cures so, for me, life and the quality of life is just more important. I have to say, I believe LDN helps me with that.:)

So, if the MS med you are taking is helping and the sides are not bothering you, killing you or interupting your life, then, I say go for it and woohoo for you..:grouphug:

Quote:

Originally Posted by AynaDee (Post 753816)

ya know?!

I will say, when I first read into what CCSVI was, my heart dropped. and this is why.

After I was diagnosed, I was scooping out the litter box. I was not crouched down because that causes my legs to instantly go numb, so I was bent over. Within seconds of being bent over, the pressure started building in my head. It got so bad within a few seconds that I literally thought if I did not stand upright immediately my head was going to explode. Didn't think too much of it until about 3 weeks later I read on here what CCSVI was. and THAT is why my heart dropped. I honestly feel that my jugular is narrowed and that is why that pressure was building, because I was almost upside down and my blood in my brain had no where to go, it was just building up in my head. That makes sense to me. But I am too afraid of the balloon procedure to have it done :(

Also, why do our doctors and big people shrug us off like we don't know what we're saying? We are the ones experiencing it! We know what neuropathy feels like, they (the healthy people) don't and have a very hard time understanding what it is. So why not listen to what we say? It's just not fair.

Really and truly, the angioplasty was nothing. My c-section was a dozen times worse. BTW, I *used* to have that same pressure feeling in my head. I don't anymore! I'm 10 months out now from my procedure and still feeling much, much, much better than I was before it.

Started taking LDN a month or two ago and now feel even better.

I did Copaxone and felt that it was doing absolutely nothing for me. I stopped taking it a month after my angio.

I am convinced beyond a doubt that my improvements from the CCSVI treatment are NOT a placebo. The improvements have been too dramatic and long lasting to be placebo.

That and the fact that personally know others who have had the same experience.

Sorry you have ms. My cousin does too. I think the drug companies could do alot more. Too much money is wasted. I was bled dry financially also. I believe science has the tools to do alot more than they do. I know there are studies out there for ms. Do you want to enter a trial of some kind? I just hope you will get some kind of better help soon. ginnie