My Journey with Multiple Sclerosis (MS)

Me with my newborn son, as Multiple Sclerosis was slowly taking root in my brain. I would be diagnosed 5 months after this picture was taken.

This is the story of my struggle with Multiple Sclerosis and my ability to live almost normally and mostly symptom-free by managing my diet.

I had always been blessed with fairly good health, although I was given to broken bones as a child. But that all changed after the birth of my first child in 2005, when I was 32 years old. (The picture here is of me right after my son was born. This was in 2005, and I was 32 years old. 5 months later, I would be diagnosed with Multiple Sclerosis.)

My menstrual cycle returned just two months after my son was born in 2005, despite the fact that I was breastfeeding. As soon as my period started, I began experiencing blurry vision in my right eye, and unusual levels of fatigue. I rubbed and rubbed at my eye, thinking I had gotten something in it. As for the fatigue, I was a new nursing mother of a baby who didn’t sleep well, and I figured that was the source of the fatigue. I thought all new moms felt as bad as I did. The blurry vision continued to get worse and worse, and finally, after numerous doctor visits and tests, I was diagnosed with Clinically Isolated Syndrome, which meant that I had MS, but had not yet had the two flare-ups required for an MS diagnosis. The diagnosis came 5 months after giving birth to my son. I immediately stopped breastfeeding and began taking medications for the MS.

I received IV steroids (Solu-Medrol) and started Avonex, a disease-modifying drug that I injected into my leg muscle once per week. The steroids stopped my vision from getting worse for a few months, at which time I had another round of steroids. The steroids made me hyper, angry, emotional, and sleepless, and caused me terrible stomach pain. I went on antacids and an anti-anxiety drug to help with that. After the hyperactivity wore off, I became terribly fatigued. It took about a month of round the clock help from my mom before I could manage daily life at home. My vision stopped getting worse, but never returned to normal.

For the next two years I stayed on Avonex. I was flareup-free, but for 24 hours after my shot, I had flu-like symptoms. The Avonex also gave me low-level constant fatigue, and made me susceptible to back-to-back, violent sinus infections. I went off Avonex in Spring of 2007 to get pregnant.

My daughter was born in March 2008. I chose to forgo breastfeeding and to start Copaxone, a daily disease-modifying injection, immediately after her birth. I stayed on Copaxone for one year. As was the case when my son was born, I had a bad flareup when my period returned after my daughter’s birth. This flareup was far worse than the first. I had debilitating fatigue (a 2-hour visit with neighbors wiped me out for 2 days), and my vision started getting worse. I also had cognitive problems, such as trouble producing words. I was treated with steroids again, and that helped stop the vision loss, fatigue, and cognitive difficulties. Again, the steroids made me hyper, emotional, sleepless, and made my stomach hurt. I had a month of debilitating fatigue. I started having chronic stomach pain and upset, particularly after eating out at restaurants.

Three months after that flareup, I started having tingling in my left hand. The doctors at first suspected carpal tunnel syndrome, but by November of 2008, as the tingling extended up my arm and into my leg, and I started having Lhermitte’s sign (shooting electrical pulses up and down the spine when I bowed my head), it was clear it was an MS flareup. I again had steroids, and again needed my mom’s help and anti-anxiety drugs for a month afterwards. My stomach problems grew worse. I stayed on Copaxone the whole time, despite having a bad episode after one shot during which I felt like I was having a heart attack, the whole left side of my body went numb, and we had to call the paramedics. The tingling abated, but returned three months later in February of 2009. This was my third flareup in one year since my daughter was born.

In February of 2009, as my tingling was again getting far worse, I ran into a friend at the mall. I told her about my MS problems. She said that she knew of people with rheumatoid arthritis (an autoimmune disease like MS is) who had been helped greatly by adopting a gluten-free and dairy-free diet and wondered if it might help me. I was skeptical. I told her that my neurologist had explicitly told me not to go on any unusual diets and to eat a balanced diet. My friend said to me, “You could try it for two weeks and see what happens. If you don’t like it or it doesn’t help, you haven’t lost anything. And if it does help, you’ve gained a whole lot.” I thought that was very reasonable advice, and went home determined to try it.

I googled “gluten-free and dairy-free and MS” and discovered a whole community of people and a wealth of information about the dietary approach to managing MS. According to Ashton Embry of DIRECT-MS (www.direct-ms.org) and Ann Sawyer and Judi Bachrach (www.msrecoverydiet.com, The MS Recovery Diet, ISBN 978-1-58333-288-7/ 1-58333-288-X), MS symptoms are frequently triggered by gluten, dairy, eggs, legumes, yeast, and sugar. Ashton Embry recommends avoiding all of these foods, while Ann Sawyer and Judi Bachrach recommend testing your sensitivity to these foods to determine which ones trigger your symptoms.

I devoured all the information I could online, then bought Ann and Judi’s book. I went gluten-free, and immediately felt my MS fatigue lift and almost disappear. After being gluten-free for one week, I knew I would never eat gluten again. A week later, I went dairy-free. My MS symptoms didn’t change, but my sinuses, which were always problematic and for which I frequently took Flonase and antibiotics (for sinus infections), cleared up. After a week of being dairy-free, I tried milk and became nauseated. I’ve been dairy-free and gluten-free since then.

A week later, with my tingling and Lhermitte’s Sign as bad as they’d ever been, I received another round of steroids. This time, instead of the steroids causing the hyperactivity, emotionality, and sleeplessness, followed by bone-numbing fatigue, I sailed through the treatment with little problems other than stomach pain, which was at its worst ever. I attribute my ability to get through the steroids with relative ease to my gluten-free diet.

After this treatment, my neurology team and I agreed that Copaxone was not helping me (I’d had 4 flare-ups in the year I’d been on it) and I went on Rebif, a three-times weekly injection. The tingling continued after this last steroid treatment, abating some. I eliminated sugar from my diet and reduced animal fat by eating only lean protein. I began keeping a detailed food diary and eliminated legumes and eggs and tried to minimize yeast. After about a month of observations and experimentation, I realized that corn was the primary trigger for my tingling symptoms.

Eliminating corn from my diet was very challenging. I have a four-page, two-column list of ingredients of corn products that can trigger my symptoms (www.cornallergens.com). I discovered that the corn products in my vitamins, toothpaste, sea salt, soda, seasonings, lunchmeat, sugar substitute, and instant oatmeal were triggering tingling. I also found that pineapple, bananas, grapes, and raisins triggered tingling. One particularly telling incident came when I had the stomach flu. I didn’t eat for two days, and I had no tingling. My hand was completely quiet. The first thing I ate when I felt better was a banana. My hand started tingling immediately. The typical pattern was that about 20 minutes after ingesting a trigger food, my hand would start tingling. Within about 4-6 hours, after my body had digested the food, the tingling would stop.

My tingling was almost completely gone. I was certain the diet was helping me and was, in fact, the only thing keeping me from another round of steroids. But I began to notice that I did occasionally have slight tingling in my hand in the morning. I began to suspect there might be corn in the Rebif I was injecting on Mondays, Wednesdays, and Fridays, as the tingling seemed to flare on Tuesday, Thursday, and Saturday mornings. After some research, I found that both Copaxone and Rebif had significant amounts of a corn substance in them. I wondered if that explained why I had terrible pain every time I injected Rebif (I was used to shots at this point, but Rebif shots made me scream and cry from the pain). After a lot of discussion, my family and I agreed I would stop Rebif and be free of disease-modifying drugs. The last residual tingling cleared up after I stopped Rebif.

The theory behind the diet is that you have what’s called a “leaky gut” which allows food proteins to leak into the bloodstream, triggering an immune system attack. Through a process called molecular mimicry, the immune system attacks the food proteins as well as your own brain tissue. So when you eat the offending foods, you experience symptoms. When you don’t eat them, you are symptom-free. You still have MS, but it’s under control. The diet also theorizes that you can, to varying degrees, heal your gut and regain the ability to eat some of the foods that previously triggered your symptoms. That has been true of me. After about a year on the diet, I could safely eat pineapple, grapes, raisins, and bananas.

One year after starting the diet and 7 months after going off all my medications, I was still flareup-free. I did not have MS fatigue. I no longer had Lhermitte’s sign. My hand rarely tingled. If it did, I could usually trace it to either some corn I accidentally ingested, stress, getting overtired, getting overheated from a hot shower, or having a cold.

My regimen for about the first year and a half was:

1. Avoiding any medications that irritated the stomach, such as ibuprofen, antacids, and corticosteroids such as Flonase.

2. Avoiding spices that irritated the stomach, such as cayenne pepper, chili powder, and paprika.

3. Avoiding beverages and foods that contain substances that affect the nervous system, such as caffeine or alcohol.

4. Limiting animal fat, choosing lean cuts of chicken, turkey, fish, and ham, with occasional portions of 97% fat-free ground beef.

5. Limiting sugar, which can alter gut flora.

6. Limiting vinegar and other yeast-containing foods, as they irritated my stomach.

7. Limiting eggs, as too much egg brings on MS fatigue.

8. Avoiding white potatoes, as they irritated my stomach.

9. Avoiding almonds, as too much almond brought on MS fatigue.

10. Avoiding all gluten, as it brought on MS fatigue.

11. Avoiding corn and corn products, as they made my hand, arm, and leg tingle, and brought on Lhermitte’s sign.

12. Avoiding bleach (including swimming pools) and Murphy Oil Soap, as they brought on weakness, dizziness, and fatigue.

13. Avoiding all dairy, as it made me nauseated and congested.

14. Avoiding all raw apple, walnuts, hazelnuts, and peanuts, as I have true allergies to them that bring on facial swelling and nearly bring on anaphylaxis.

15. Taking probiotics to heal my gut, a B-complex and fish oil to heal my brain, Vitamin D to bring up my levels and help with fatigue, and calcium for my bones.

I believe that the 6 courses of steroids I received to treat my flare-ups, along with the antacids I took to combat steroid-induced stomach pain and the ibuprofen I took to combat disease-modifying drug side effects ruined my already sensitive gut, causing me to be very sensitive to certain food proteins to the extent that they triggered my MS symptoms, particularly fatigue, tingling and Lhermitte’s Sign. I have never found a relation between my Optic Neuritis and food. The Optic Neuritis seemed to be triggered only from having babies.

In retrospect, it is clear that I became sensitive to dairy and gluten in my early 20s, although I didn’t go gluten-free and dairy-free until my early 30s. In my 20s, I was busy eating the Food Pyramid: plenty of Raisin Bran for breakfast, turkey and whole wheat bread with pasta salad for lunch, pasta or lean chicken and rice for dinner. This kind of diet made me irritable, angry, depressed, hungry, overweight, and, by my late 20s, nauseated.

About a year and a half into my diet and recovery, I was feeling fantastic. I had no flareups, plenty of energy, and I could do moderate exercise. I could do all the things I wanted to do, as long as I stuck to my diet and got enough rest. The only problem was that my low fat diet was making me hungry all the time. I began doing more reading, first discovering The Paleo Diet by Loren Cordain, which was very similar to my MS Recovery Diet. I began reading about other versions of the Paleo Diet, and discovered that many authorities believed that a high fat paleo diet was the way to optimize health. I added healthy fats back into my diet, eating fatty cuts of meat and using olive oil, coconut oil, and butter liberally. My hunger abated, and my weight stayed the same. I was in heaven and began to feel invincible. MS seemed like a distant memory. It almost didn’t even feel like it applied to me anymore. I discovered that I had healed so much that I could add back in a number of items I had previously had to restrict. I could use products that had a little bit of corn in them, like regular toothpaste, medications, and even a little bit of corn-sweetened condiments. I could take ibuprofen or antacids occasionally as needed. I could eat white potatoes, vinegar, tomatoes and spices like cayenne, paprika, and chili powder. I was thrilled to have chili and tacos back on the menu!

Emboldened, I began to experiment with dairy. Dairy is an excellent source of saturated fat, and is a terrific way to get fat into your diet. I went for high fat dairy like sour cream, heavy cream in my coffee, or a little bit of cheese in a recipe or for a snack. It helped me lose a few more pounds, but it did make me congested, just like before. After six months of experimenting with dairy, I had chronic tinnitus (ringing in the ears) and was getting chronic sinus infections. No more dairy for me!

I also learned that I can now swim in pools safely, although I still don’t clean with bleach or Murphy Oil Soap.

I believe that as long as I stay on the MS Recovery Diet, work to keep my gut in good shape, avoid having any more babies, and am careful about exposure to chemicals, I will be fine and my MS will be manageable so that I will not have to be on disease-modifying drugs or have any more steroid treatments.

My MS is under control. I don’t have bone-deep fatigue. The tips of my fingers tingle occasionally, but it always goes away and it’s never enough to warrant steroids. My vision isn’t great in my right eye, but it does not get worse. I can do most things I want to do. But I do have some limitations. I have to eat perfectly healthfully 98% of the time in order not to have serious health repercussions. That means I can’t eat processed food. I have to make all my food from scratch, using ingredients as close to how God made them as I can. I have to rest for about 45 minutes each afternoon. I have to get to bed by 10 pm. I can’t have too much stress in my life. I can’t push myself extremely hard, either in my work or in exercise. If I slip up and do any of these things, I can easily make myself sick again. I am not a normal person, and I probably never will be. I can’t do the things most people take for granted, like staying up late on the weekend, toasting on New Year’s with champagne, pushing myself to work really hard or really long hours, grabbing an easy meal from the store or a fast-food joint, munching a doughnut on Sunday morning.

But that’s okay. God taught me through my MS to slow down, to take care of myself, and to eat properly. Through this experience, I am able to share what I know with other people so that they don’t have to get or stay sick. God told me early on to pray and to say “thank you” for my MS. I did it through clenched teeth at first. Now, I can truly say that MS was a gift from God.

I told my neurologists the story of my recovery using dietary interventions, and they were skeptical. They did not believe the diet was responsible for my good health. This was not a surprise. Most neurologists are not taught about the diet. There have been no clinical trials of the diet so far, although Ashton Embry and DIRECT-MS have finally raised enough money to start some. No doctor is going to advocate the diet until there is scientific evidence that it works. But that evidence is hard to come by. The diet is hard to administer and control, each person’s triggers are highly variable and idiosyncratic, and no one stands to gain financially from people using the diet (the drug companies don’t have this problem). My neurologists did say, however, that my diet was very healthy and that it was fine to continue it. They wanted me to stay on drugs, but I refused.

I would urge anyone with MS to give it a try for at least two weeks (although some people may need longer to see results). As my friend said to me, if it doesn’t work, you can stop doing it. And if it does, you have gained so much. I can’t assert that it will work for everyone, but I know two things: 1) it has worked for many other people, and 2) it has worked for me. I know without a shadow of a doubt that if I eat gluten, almonds, or eggs, that I will experience bone-deep MS fatigue. I know without a shadow of a doubt that if I eat corn, I will experience tingling in my hand and/or leg and even Lhermitte’s Sign, if I eat enough corn. Maybe someday my gut and brain will heal enough that I will be able to eat those foods, but for now, they remain off my plate. Incidentally, I had gained 40 pounds of baby weight with my pregnancies that I struggled to rid myself of. Within 6 months of starting the diet, all that weight came off effortlessly, without dieting or exercising.

Anyone who would like to contact me about MS or my experience with the MS Recovery Diet should feel free. It would be my privilege to talk to you.

To read more about how to implement a recovery diet from autoimmune or other inflammatory diseases and conditions, read my article Dietary Therapy for Autoimmune and Inflammatory Diseases.

 

Some important resources for me have been:

• Ashton Embry’s DIRECT-MS web site: www.direct-ms.org

The MS Recovery Diet , by Ann Sawyer and Judi Bachrach

• The MS Recovery Diet web site: www.msrecoverydiet.com

The Paleo Diet, by Loren Cordain

• The Paleo Diet web sites: www.paleodiet.com/ms/ and www.paleodiet.com.

• Mark’s Daily Apple web site: www.marksdailyapple.com

The Primal Blueprint, by Mark Sisson

Another great reference is Dr. Terry Wahl’s TEDx Talk “Minding Your Mitochondria”, a 17-minute video where she tells about recovering from a debilitating case of Multiple Sclerosis through diet.

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Comments

  1. Thank you for telling your story and for all the information. I have not been diagnosed with ms but I have a suspicion it could be that. I started having symptoms of muscle weakness and electrical charges after having my second child. That has been 5 yrs ago. When she was 2 I had an MRI that showed up clear but have cintinued having fatigue, bad brain fog and weakness down my right side with pain in those joints. To look at me I look like a healthy 32 yr old and have 3 little girls but I know something is wrong. I think through a lot of research food is a major perponent! I’ve gone gluten free here and there but not consistently enough. (I love bread) the lactose thing is something to think about too. And I would not have thought about the corn but it’s in Everything. I love what you said about what God has taught you through this!

    • Ashley, I can’t encourage you enough to immediately make changes to your diet to see if you feel better! You have nothing to lose and everything to gain! Don’t play around with it; go whole hog. Cut out any suspect foods (esp. gluten, dairy, egg, legumes, nightshades, soy, corn) and see what happens. As for loving bread….I’ve always said that I’d rather eat gruel for the rest of my life and be able to live my life fully than eat bread and be too sick to take care of my family and live out my purpose in life. Forget about bread! It’s nothing! Health! That’s what matters. That’s what will allow you to live out YOUR purpose in life and take care of those three little girls. Do it today!!!!

  2. This is such an incredible story! I was diagnosed with MS 3 years ago, and had no help whatsoever about MS in Pakistan. I have had 3 relapses in these 3 years, but I have actually understood my MS now and i can cay that I am living a healthy and active life without any MS symptoms, all because I follow a very strict diet which includes lots of fruits and vegetables, no meat intake (only fish and chicken), minimum dairy products and I also avoid all sorts of junk foods. I am still single and in a confused state whether I should get married and have kids with MS? Please help me with that, as you are a mother with MS too. Does childbirth lead to MS relapse? Can MS patients lead a healthy sexual life?

    • Hi, congrats on your healthy eating and remission! Well, obviously, I can’t advise you on whether you should get married or not. I absolutely do not regret marrying and having children. Giving birth is a big trigger for my symptoms, and that is the case for many women. We personally chose not to let that deter us from having children. MS has a genetic component, so we knew that we could possibly be passing MS along to our children. As I recall, there is something like a 4% chance they’ll get it. But again, we did not choose to avoid having biological children for that reason. I do not feel my life is not worth living because I have MS, so my children’s lives would be worth living if they have it too. Some people with MS do have sexual dysfunction, but certainly not all. But these are questions you should discuss with your doctor. I’m not advising you, only sharing my experience.

  3. Your website is wonderful, thanks for sharing. please keep us updated on your symptoms. i have several relatives and friends with MS – the number keeps growing. Your diet makes sense – I am sharing your site with them – I hope they try your diet. Thanks for sharing.

    Allergy cross-reaction: When my son was a baby, each time he ate regular food he would get a hive. The only food he could eat was green beans. i worried he was going to be a baby in a bubble – allergic to everything. I moved closer to family and went back to work – Son was able to eat my mom’s food without problem (she doesn’t do boxed meals). Son no longer breastfeeding. Then i fed him tuna helper one day and he got asthma and hives. Soon he started getting reactions when he ate other food. Then i realized MSG (monosodium glutamate) was a heavy ingredient in tuna helper that started triggering all the reactions. I realized then that son looked like he was allergic to many foods as an infant because i ate foods with MSG when he was an infant – it traveled through breast milk – when he ate any other food it cross reacted. Son is still allergic to MSG today. When he eats a lot of it – it cross reacts with other food – especially wheat/corn products.

  4. Thank you! You did a wonderful thing for your son by being attentive to him and figuring out it was MSG. My symptoms of MS are still at bay, thank the Lord.

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  1. [...] if all these symptoms would resolve. After all, as my friend told me when I was considering going gluten-free to help my MS , what did I have to lose? (Click here to learn about how to help your own autoimmune disease [...]

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  5. [...] here, here, and here). Since I’m almost 40 now, that’s a good 30 years of CONSTANT struggle. Finding the MS Recovery Diet and the Fit4God program changed my life in that my cravings were reduced, my weight became [...]