Sunday, December 13, 2009

Marie Claire Should Have Thought Twice About Running This MS Story...

I was sent an email to read and give my opinion as a blog post on the following article, "I Had an Unthinkable Disease...And Made Myself Better" written by Kate Milliken, as told to Abigail Pesta, that appeared in Marie Claire January 2010 magazine.

Yes, my story is controversial. People worry that I'll spread false hope. Once, a woman who had suffered from MS for 30 years said to me from her wheelchair, "Don't tell me to put a Post-it note on my mirror—give me a break." Some say maybe I never had MS to begin with. All I know is that the doctors diagnosed it, and I have the before-and-after MRI scans to prove that a lesion had come and gone.

I continue to take the injections, along with a few vitamins.

First let me say, YES! Her story is controversial. It is also irresponsible of Marie Claire to publish the article of person who was diagnosis with MS and twelve months later they are claiming to no longer have signs of MS lesions. The storyteller did not say if she had her MRI's with and without contrast. There is a chance of having an MRI without contrast that will not show lesions clearly that is why when given an MRI it is best to have it with contrast so there will be no dispute of the reading.

I have an issue with the story teller stating in the article, "A day after my scan, I met with one of my doctors at Mt. Sinai, Dr. Stephen Krieger. His words floored me: No new lesions. As for the lesion that had caused all my problems? It had "faded significantly," he said.

"Is it smaller?" I asked him.

"It's actually so faint, the radiologist didn't recognize it," he said. "That's as good as it gets."

I have to believe she was given an MRI without contrast. It is irresponsible to claim she no longer have MS lesions. If she no longer has lesions or symptoms of MS, why continue to take daily Copaxone injections, one of the drugs that slow down the progression of MS. You either have MS or you do not, as far as I know, as of today there is no known cure for MS.

I am happy for her that she is no longer having an MS exacerbation. There is nothing wrong with positive thinking and adjusting your lifestyle to live with an unthinkable disease, but is wrong and irresponsible to claim to no longer have MS lesions because of holistic treatment, but your still taking a daily disease modifying drug injection.

What are your thoughts?


Webster said...

My thoughts are these: The doctor did NOT say "You no longer have MS." The doctor did NOT tell her to stop taking a disease modifying drug. And the doctor also did not tell her that MS lesions come and go all the time, especially with early RRMS. So, you are right, Marie Claire ended up publishing a sensational article for its readership. Shame on them.

S.S-O said...

I think that maybe she is just in remission stage now NOT that she no longer has the diesase. You're right, if she doesn't have it, why till take the DAILY shot??? that makes no sense whatsoever. It's good to have a positive outlook on the disease/dealing with your situation, but i agree with you also about publishing this article and maybe giving someone false hope.

Enjoying the Ride said...

Kate Milliken is a professional video journalist. Her site, is the most impressive MS patient website that I've ever visited. She really is very good at what she does. I watched the first half of her story and was mesmerized. She seemed like an amazing person with a compelling story.

Then I started to see where her story was going. Oh crap, I said. Another person who says you can beat MS if you just try hard enough. Damn. From a person who after 8 years of PPMS is in a wheelchair and still progressing quickly, I am not interested in this type of story.

But, good for her. For whatever reason, either her actions or pure luck, she's having a very mild course of MS. I wish her luck. I don't care for her story, but damn, it is very well told.

Blinders Off said...

Webster, SSO, and Enjoying the Ride

Thanks for giving your thoughts on this post

There is nothing wrong with Thinking Positive. It is what WE must do to live the MS or any other chronic illness. If WE did not think positive we would go downhill quickly living with MS. According to her website, she is seeing a doctor that does not treat MS; she is seeing a doctor that practice osteopathy which is...

A system of medicine based on the theory that disturbances in the musculoskeletal system affect other bodily parts, causing many disorders that can be corrected by various manipulative techniques in conjunction with conventional medical, surgical, pharmacological, and other therapeutic procedures.

I truly wish her the best of luck. IMO, I think it is too early in the game of her seeing a doctor who practices osteopathy to claim she is beating MS. WE all know the highs and lows of the MS Rollercoaster.

Diane J Standiford said...

I agree with all the comments. MS comes and goes in the first years. That is MS in the majority of cases. But to say diet or anything else caused where your MS is, well that is just wishful thinking.

日月神教-向左使 said...