Sunday, September 14, 2014

Time to "Weigh In" on the MS Diet Discussion

The MS Connection Blog recently posted from 2014 Joint ACTRIMS-ECTRIMS conference about a lecture that certain diets have shown to make no difference when it comes to developing MS.  Go to their post at "Is diet a risk factor for MS

Now that an MS diet has risen to the attention of such a large collection of Multiple Sclerosis experts from all over the world, I decided to share my thoughts.

Over the years, I've listened to people insisting that there must be a diet (way of eating) for MS.  I have heard people claim that they've cured their MS or significantly reduced their symptoms (no longer need a wheelchair, can see again, tingling gone, e.g.) by adopting certain eating habits.  I find it interesting, but ignore most of it.  Here's why:

In 1986, before I was diagnosed with MS, I had an attack of severe vertigo and dizziness.  After about two months without changing my eating habits, I recovered.  An unfortunate side effect, though, was constant fatigue and a
tremor.  Someone that I trusted with a medical background told me that I must have chronic low-blood sugar (LBS), which is often triggered from trauma such as an extended illness.  Having no access to broader research sources (the internet was still developing and not yet in homes), I believed this person.

The LBS treatment was a high-protein, low-carbohydrate diet. Although low blood sugar was never diagnosed in me, I found a book by a man who explained how he cured his fatigue with this diet. He explained that doctors don't understand LBS and there's no good test for it. Being so tired and trying to work full-time, I grasped at anything.

So for years, I ate a snack every two hours composed of foods low in sugar, no added sugar, minimal bread products (low gluten), high protein, low carbs. Things seem to be okay, but I would get episodes of severe fatigue and insist that my blood sugar had dropped and I needed to get food.  The right food.  I'd feel fatigue wash over me at times, and criticize myself for not eating correctly. 

So I added high-doses of vitamin B-12 (under a physician's guidance).  Other people swore that it helped their fatigue, but it didn't help mine.  

I added exercise, long walks, ballroom dancing.  Other people swore that it helped their fatigue, but it didn't help mine.

In the following years, I experienced episodes of blindness, pins-and-needles from the waist down, severe muscle spasms.  All cleared up within two months.

Then I was diagnosed with MS.  

In hindsight, I now know that my fatigue episodes were not caused by eating the wrong foods. With improved testing, I now know that I do not have low blood sugar. Now I try to eat a healthy diet using the Mayo Clinic's guidelines, and manage fatigue with energy conservation techniques, mindfulness meditation, and naps. I exercise in small, energy-conserving chunks. I avoid energy vampires (people who suck the energy out of me) and noisy crowds.    
"Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS."
We each experience MS differently. Each person has different symptoms, reacts differently to the disease modifying drugs.  Relapses come and go in different ways.  Healthy diets come in all shapes and sizes (plate or pyramid). Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS.  But I am one person, and I react one way.  If a certain diet or pill works for you, stick with it.  But don't be surprised if it doesn't work the same for me.

Read about my long road to diagnosis here

1 comment:

  1. My thoughts as well and when diet comes up in discussions I try to encourage healthy eating but I have trouble saying an MS diet will pay off fixing anyone's MS, considering the time, effort and money it costs.