good for you, Dejibo. I don't know your name so calling you by your webname.

I don't think I commented above on the horribleness of the "kickbacks" for Rebif. That shows the full extent of human evil.

No Pharma vacas here...
 

1st, I am not rebutting the OP at all, I so believe it; I just believe I have an unusual Dr., for one thing, he is the person who suggested LDN, before I even mentioned it to him

I didn't mind Rebif, but my neuro, bless his soul, pulled me off (against my will, believe me) due to fixed site reactions. My Dermatologist assured him they were not a problem...Neuro wasn't willing to take the risk.

He also took me off Copaxone, but the reactions were much worse, and I was glad to quit.


Now, he and certain other PHARMA folk have had a few words and he basically told them to take all their goodies and not to darken his door again, lol. It doesn't mean his pt.s can't get option of that drug, he just doesn't approve of certain things about .....

Guess he'll have to pay for his own vacations.

Tante, I wish I could go to your doctor! ;)

I have been a bad girl and haven't injected Copaxone in over a week. I am just tired of the whole scene. blech.

When I think of how much better I did on the Swank diet than my aunt did on her high fat diet (she had MS and died around fifty, blind, unable to speak, unable to move)! As some of you know, I had an MS dx, then a Porphyria dx, but I have realized they are not mutually exclusive. I believe that whatever I have is a cross over between MS and Porph.
If it isn't, it might as well be. There were three other MSers in my dad's family--his sister and two cousins. All dx'd with MS. But my dad, another sister, and my grandmother probably had Porphyria--hematologists say they would dx them even though they have passed on. So--of known relatives--three and three. I have had about equal
of doctors saying it's MS and saying it's porph. So the bottom line is this: does anything help? Yes, a diet helps. Swank diet. I never would have been able to take the CRABS
because I had the Porph part, but now, when I've tried Interferon for another disease I have now, Polycythemia Vera, I can see how MUCH I would have suffered on the CRABS.
I would have given up. But I didn't give up the Swank diet because it helped. I got sicker immediately when I went off it--lost balance, primarily, enough to put me back on the diet within days.

I don't say it will work for all. I say it is better than CRABS for some people. Definitely.

well, why am i not surprised. i don't recall THAT making the news!
things like this should be better exposed by the media.

but, it won't change. look at wall st. they're still doing the same old same ol.

May I ask what the 'fixed site reactions' were?

I feel I may be experiencing that with my Rebif, nasty spots all over and now the top layer of skin on my abdomen seems to be dying, its dry flaky skin, with redish purple spots everywhere...

I am battling taking/staying on this drug, said I was stopping last week, but I am so scared of that wheelchair so I have continued to take it, even though I flare constantly it seems.

Rebif has made me feel very ill today on top of what I am dealing with in this flare. I am trying to come out naturally but it seems the numbness is spreading and I have a new issue everyday I wake up, just trying to hold off as long as I can on the roids. :eek:

[quote=AynaDee;771270]May I ask what the 'fixed site reactions' were?

II have to come back to this tomorrow, but NO, mine were nowhere near what you speak of on your abdomen.
Does your Dr. know?

Tomorrow.... sorry.

[QUOTE=tante;771358]I explained what they looked like to the nurse and she said that is a very common side effect of the drug. But the spots on my legs are big probably the size of a half dollar, the skin isn't as dry and dead looking as my abdomen. The abdomen spots are slightly smaller but the skin is much worse than my legs, almost looks like a peeling sunburn :confused:

I feel like they blow me off all the time, like they're burnt out on the MS community. They're very neglectful like trying to put me on drugs that I have already been on and have almost killed me. Or that the horrific pain I was experiencing on the right side of my body couldn't possibly be my liver because the liver is on the left side of my body (the docs at the hospital about fell over when I told them that my neuro's nurse told me that). AND I was on Rebif for two years before I had any blood work done.

Yeah, now that I'm reading back through that, I'm thinking I need to find a new neuro :(

What's even suckier about that is he's an MS specialist.