About

By dee

My wife, Moe, was diagnosed with muscular sclerosis (MS) in March, 2010. She was delivered the news of her diagnosis while driving home from work (seriously). I still remember her coming home and going straight into the bathroom and crying. She told me that she might have MS, but neither one of us really knew what that would mean.

We were very frightened. Our primary care physician wanted us to go see an MS neurologist right away. We got an appointment with a neurologist and Brigham and Women’s hospital in Boston, which was supposed to be the best MS clinic in the city. After an MRI and spinal tap was done, we were told that she definitely had MS. This was on a Friday. Dr Deigo-Sanchez told my wife to go home over the weekend, read information on a drug therapy website, and to return the following week with a decision on which MS drug she wanted to take…

OUTRAGEOUS! Here we are with NO experience with MS or MS therapy drugs and we are sent home to read a website. Turns out Dr. Diego needed to know since she was going on vacation for three weeks! At this point, we went to Beth Israel hospital, also in Boston. It was decided (by us!), that Moe would start the beta interferon drug Avonex.

Soon after starting the Avonex, we went for a second opinion with a Dr Kinkle at Beth Israel hospital in Boston. He confirmed the MS, and left on on Avonex and sent us on our way until the next MRI, six months later.

Moe was told that she might have “flu-like” symptoms after injecting the Avonex, but that this would “only” last a day or two. Turns out my wife had HORRENDOUS side effects; full body pain down to the bone, headaches, nausea, dizziness, vision problems and more. Moe took her shot on Sunday nights, since she had Mondays off from work. Things got so bad that she had severe anxiety all day on Sunday, felt terrible from Monday-Thursday, and then felt slightly less than horrible on Friday and Saturday. Then the cycle would start all over again. The answer from the MS specialist was in his prescription pad; more drugs with their own side effects. At one point Moe was taking almost a dozen pharmaceuticals in addition to the Avonex.

Ten long months later, things got worse; Moe got extremely depressed. How could she go on living with so much pain and anxiety? Was it all really worth it? For her the options were living with 24/7 pain and a high potential of physical and mental disability, or leaving this world altogether. It was time for a major change.

Unable to get hold of Dr Kinkle, we went to our most excellent PCP, Dr Lauren Abbate. Dr Abbate knew that Moe had to come off Avonex immediately. Dr Abbate contacted Dr Kinkle directly, who then agreed she should stop taking Avonex. The plan would be for Moe to be off Avonex for a month, then the mighty prescription pad would come out again, bringing more poison from the pharmaceutical companies.

We started to do more research. Anything to get us out of the Western medicine pharmaceutical web, and to help Moe feel like herself again (she noted with great despair on a number of occasions that she no longer felt like herself, and that she didn’t even recognize her own body). We came across Gerson Therapy, LDN, the Swank Diet, and more. We read about how much diet can influence healing (we had at this point eaten a vegan diet for three years, so quickly learned that we were in a good position to get Moe healthy).

The final straw for us, was when we borrowed my mother’s book The Kind Diet, by Alicia Silverstone. In the book, Alicia talked about her friend and spin instructor, Tevia Celli-Reht. Tevia had been diagnosed with MS, but decided against taking any of the MS drugs. Instead she completely changed her diet, and got a lot of exercise. Her diet research let her to Dr John McDougall, a physician and nutrition expert. Dr McDougall’s diet was based on his friend Dr Roy Swank’s MS diet, developed over 60 years ago.

We decided that our best bet was, as Moe put it, to¬† “go rogue” from Western Medicine. Armed with the knowledge of a strict vegan diet, vitamin supplements, fish oil, and a steady flow of fresh vegetable juices (we got this idea from Gerson Therapy and from our fav Dr Schulze), we decided to take control of Moe’s health.

This blog is a diary of our journey. We will try to update at least weekly, and give some tips for diet, supplements, juicing, exercise, meditation and more. Our hope is that our (and mostly Moe’s!) experiences will help others in their fight to regain their health.

Much love,

Dee (the husband) and Moe (the wife)

 

Comments
  1. Matt Georger says:

    I was diagnosed about 9 months ago. Thank you for sharing you story. My VA neurologist has never talked to be about going on any type of diet.

    Thanks again.
    Matt

    • dee says:

      Hi Matt,

      It’s not uncommon for doctors to not talk with their patients about nutrition. We’ve found it very important to educate ourselves about what foods/drinks are good/bad for people with MS.

      I would highly recommend reading up on Dr John McDougal (http://www.drmcdougall.com/). He has a lot of knowledge about MS and diet. From what we have learned, diet and exercise are essential in controlling MS.

      We are planning on doing some more updates to this site, with hope that it will help other people. More to come soon.

      Dee

    • Robert says:

      and they never will Matt. Youre on your own w that. you got to be your own dr. google and youtube are your best friends.

  2. Cynthia says:

    Interesting – I am passing on to an acquaintance who is managing her life with MS.

  3. Virginia Frascone says:

    Thank you for sharing your story!! I was diagnosed with MS in September 2009. My biggest fight is with the fatigue! I dont take the shots, I dont have any problems with walking or seeing. I am trying to find ways to fight the fatiuge!
    I am glad to find this web site!!
    Thank you!

  4. Robert says:

    You did a great job w this site. Have ms 16 years and still walking. I know real iisshh when I read it from b.s. Thanks – Robert

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