What About Kale?

After my diagnosis I like most of the MS population was put on a Disease Modifying Drug. My drug? Copaxone. It was good for a few months and then it wasn’t.  

Post diagnosis, like most people, I researched. I mean, I felt like I was back in school with the amount of researching I did. But this time it was different…I was researching for my life.

Why do I have to take these drugs? It’s a progressive disease. Why can’t I just pour coconut oil over this and prat it gets better. What about Kale?

Well after a few  months of being on the drugs and feeling like total crap I got desperate. I took all the research that I had done and decided that was it! I stopped the injections, bought the oils overhauled my kitchen and threw away everything that wasn’t “healthy”

Processed food? Gotta go.

Diary? Adios

Pork? See ya

There is currently a study that is being done at New York’s Mount Siani Hospital by Dr Iliana Katz Sand, where they are looking at how food might be the medicine to combat MS. This  new study uses the microbiome (a bacteria that lives in the digestive tract) and diet. Mostly they are trying to see if it is possible to reprogram the immune system to inadvertently slow down the immune systems attack on it self.

You might be thinking, well what about the meds? I hear you! I’m back on mine – not by choice. However it doesn’t hurt to put the facts out there. About 70% of the immune system is made up from the gut . So it only makes sense that what we feed it will have a direct impact on how we feel right?

So what are they eating? They are all following a strict Mediterranean style diet. Basically trading in the processed food, dairy and meat for fruits, veggies and whole grains.Why these foods? They are thought to be anti-inflammatory.

I’m not sure why this is such a new concept – the gut and how it affects the entire body, but it is, and the research and studies that are being produced are pretty incredible. The phrase you are what you eat is not just a saying any more folks!

For more information on this study and Dr. Katz Sand press here

Stop In The Name Of Science?

In my two long short years of having MS I have been on two different drugs. Mainly because I decided to quit my first drug, why you ask? I’m a rebel.

Really, I was just tired of sticking a needle into my then, very fit body. So, after give or take 6 months of stabbing myself I decided this isn’t for me, said good-bye to the needles, and hello to drug free existence. It was great, at first. But 6 months of trying everything other than drugs, resulted in me shuffling into my Dr’s office, and him swiftly prescribing what I’m currently taking, Tecfidera.

Not a year later I came across a study and thought I would share.

Here’s the deal. A study was done where a group of people with Secondary Progressive Multiple Sclerosis, and Relapsing Multiple Sclerosis were taken off their DMT’s, (Disease Modifying Drugs). For those of you not in the know, or that might need a reminder – a DMT is what is needed to help those with MS help live their best lives. The MS center at Wayne State University defines DMT’s, as a drug that can modify or change the course of a disease. In other words a DMT should be able to reduce the number of attacks and/or also slow down the disease from progressing. [1]


Currently there are 15 DMT’s on the market with many still being tested and tried. There’s even a study going on in Canada using an antibiotic originally used for acne now being used for Relapsing Remitting MS, more on that one later! Now before you start fantasizing about your soon to be drug free life, lets talk more about this study overseen by Gary Birnbaum, MD – a MS specialist in the Minneapolis area.

“In most people with RMS, patterns of disease change over time. Acute Inflammatory changes, manifested as new lesions on central nervous system (CNS) magnetic resonance images (MRI’s) or as clinical relapses, decrease with an associated decrease in acute inflammation pathologically. There may come a time when an individuals disease no longer requires medicate to control acute inflammation.” [2]

Pretty interesting stuff huh?

Who participated?

All participants were under the care of Dr. Birnbaum at time of study.

The ages of participants of the study spanned from 49- 61, the majority being women, and were separated into two groups. 77 patients were in Group A, which consisted of patients whom had RMS previously but showed no acute CNS evidence for 2- 20 years and were asked to stop their DMT’s. And 17 patients were in Group B – that consisted of patients currently with RMS who voluntarily discontinued their DMT’s.

Both groups were scheduled for MRI’s, and clinical evaluations for 1 year after cessation of drug use. The minimum was 1 year of evaluation after cessation of drug use.

How was it measured?

In order for acute disease to be considered reoccurring there had to be a change, either on physical examinations or from MRI’s. Physical examinations if new symptoms that could be characterized as MS symptoms would occur – i.e. lasting longer than 24 hours without any evidence of virus, etc. MRI- detection of new lesions from imaging.

It should be noted all participants used the same imaging machines and their scans and all scans were looked over by the same neurologists.

Those that showed either of these characteristics were offered their DMT drugs.

And the winners are?

Group A, who now have Secondary Progressive MS, had a 11.7% recurrence of disease, with some having clinical changes and new lesions showing on the MRI, others although stable also had new lesions

Group B, who are Remitting MS had a 59% recurrence within 1 to 2 years of stopping DMT’s.

From this study we can gather disease progression makes a difference, but can age? If should be noted that participants in Group B were younger than the participants in Group A. So in answer to the question, in this case, yes it matters.

Older individuals, with no clinical or MRI evidence of RMS for 2 years or greater can stop taking their DMT’s with a very high chance (90%) of non-recurrence. This and other studies show that people who have RMS number of relapses over time diminish, along with MRI manifestations of lesions. Another interesting fact is that in most autopsies of older patients with MS show almost no signs of acute inflammatory changes, or lesions, according to pathological studies. But I’m getting off subject. The study came to the conclusion that it could be safe for older patients to discontinue their DMT’s if there are no signs of acute central nervous system inflammation for 2 years, without fear of recurrence of disease.

Whether you decide to stop your meds or continue to stay on them it is very important to seek counseling from your doctor. If you don’t currently have a doctor, the best place to start is with the NMSS.





[1] http://mscenter.med.wayne.edu/pdf/disease_modifying_therapies_for_ms.pdf

[2] Birnbaum, Gary,MD. “Stopping Disease- Modifying Therapy in Non relapsing Multiple Sclerosis, Experience from a Clinical Practice” International Journal of MS Care 19.1 (2017): 11-14 (Print)