- Diseases, Disorders & Conditions
The Wahls Diet for Transverse Myelitis - My Experience
My Transverse Myelitis Story
I have had transverse myelitis since 1995. I had been sick with flu-like symptoms for about six months when I began having symptoms of optic neuritis. The problem was especially bad one night driving home when I was blinded by on-coming headlights. I pulled off the road and called someone to take me to the emergency room, where the doctor told me I needed a flu shot. After receiving the flu shot I went home and went to bed.
The next morning when I woke up, I had such severe weakness in my legs I could not walk normally. Over the next few days I developed excrutiating sensations of electrical currents running up and down my legs. I could not walk without a limp. My left leg was especially weak. I also had back pain and a terrible headache.
My family doctor did not know what was wrong with me and diagnosed chronic fatigue syndrome and a viral brain infection, but also sent me to a neurologist. The neurologist diagnosed me with transverse myelitis, an inflammation of the spinal cord. I also saw an infectious disease specialist who explained to me that I had Epstein Barr virus.
It took many years before I finally understood what had happened to me. I went many years thinking I had a disease called chronic fatigue syndrome and did not understand that I had been misdiagnosed and actually was sick from transverse myelitis. The damage to my spinal cord was initially caused by my immune system attacking the myelin surrounding the spinal cord, thinking it was the EBV virus. This caused a vulnerability, resulting in repeated attacks by the immune system on the myelin whenever my immune system is activated, such as if I have a cold, flu or other infection in my body.
The result was a relapsing and remitting of symptoms over the next 15 years. I would go a year or two with no serious symptoms other than extreme fatigue if I overdid things. This stage of the illness did resemble chronic fatigue syndrome, because my primary symptom seemed to be fatigue, but periodically I would relapse into TM symptoms and develop a limp and weakness mostly in my left leg. In retrospect, the relapses were coming more frequently as the years went by, but I was not paying attention. I was busy raising my children and running my household and really stayed in denial a lot.
What should have been a wake up call occurred in 2006, when I was pushing through a relapse, trying to do more than I should have. One morning my symptoms were especially severe and then quickly they started advancing up my body. My arms were weak, then I could not move my legs at all, I could barely move my arms, then it became difficult to breathe and to speak. I called 911 and went by ambulance to the emergency room where they admitted me, ran numerous tests and diagnosed transverse myelitis once again. When those symptoms remitted about six or eight weeks later, I went back into my state of denial; but, after that I experienced the migration of symptoms up my body frequently if I overdid things.
My neurologist told me my symptoms would continue to come and go, but they would not get worse. In fact, he told me it was not necessary to continue my visits to him.
Then in 2010 I realized my relapses were coming very close together and my symptoms became a lot more severe. Both legs were affected, as well as my arms and hands. I had three relapses that year and after the last one I never regained the level of functioning I had previously had during periods of remission.
At the beginning of 2011 I returned to the neurologist and he referred me to the MS clinic. He felt I must have multiple sclerosis, due to the symptoms and the progression I was experiencing. However, those tests came back consistent with transverse myelitis and nothing else. Although TM is a demylinating disease, and is in the same family of illnesses as MS, none of the MS treatments are approved for TM. Some doctors are using steroids with TM patients, but it is not really known how effective these are. I had a bad experience with steroids in the past, so that did not seem to be the right option for me. My doctor could offer me nothing in the way of answers or treatment, with no idea how fast the progression would occur or how severe it would get. Really, he was stumped and could not tell me anything.
I am currently on a search for a new neurologist who might be able to offer me something, but this seems to be an area with very little research or information. I felt pretty discouraged and frightened. Over the past two years I have gone from needing a cane during relapses to a walker and now to a scooter. It is scary to think there is nothing that can be done and I may just continue to deteriorate until I cannot function at all.
Then one day on Facebook I saw a video about a physician with secondary progressive multiple sclerosis, who had at one time been using an incline wheelchair for a period of four years, was facing the life of an invalid. After much research, she developed a diet for herself that sought to provide the nutrients her body needed to salvage and rebuild damaged brain and nerve cells. Today Dr. Terry Wahls rides a bicycle five miles to and from work every day. Since MS and TM are very similar diseases, I began following her posts and thinking about whether or not the Wahls Diet might be beneficial for me.
Transverse Myelitis Poll
Do you have transverse myelitis?
Transverse Myelitis on the Web
- Transverse Myelitis Fact Sheet | National Institute of Neurological Disorders and Stroke
Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflamm
- Transverse Myelitis Association
The organization advocating for children, adolescents, and adults with the spectrum disorders of acute disseminated encephalomyelitis, neuromyelitis optica, optic neuritis and transverse myelitis.
- Transverse Myelitis Net
Transverse myelitis awareness website by patients with information and personal experiences, along with resources, advice and TM news.
- The Transverse Myelitis Center at Johns Hopkins University Medical Center
The Johns Hopkins Transverse Myelitis Center was established in October 1999. It is the only clinical and research center of its kind in the world. Dedicated to the diagnosis and treatment of acute transverse myelitis (TM), we strive to gain an even
Dr. Terry Wahls
Minding My Mitochondria - Dr. Terry Wahls and the Wahls Diet
This is Dr. Wahl's first book describing her battle with multiple sclerosis, her research leading her to develop a nutritional plan to halt the progress of her disease that eventually led to a reversal of her MS symptoms. This is also available in large print.
Dr. Terry Wahls links micronutrient starvation to the epidemics of chronic disease that are overtaking modern society. She explains the key roles mitochondria play in maintaining a healthy brain and body. Americans are eating so poorly, something we all know to be true, that the majority of Americans are missing key building blocks that are needed for brain cells to be healthy. The result is an epidemic of depression, aggression, multiple sclerosis and early dementia. She then teaches you how to eat for healthy mitochondria, a healthy brain and a healthy body in language that is clear and concise, even for those without a science background. In this book, Dr. Wahls explains basic brain biology in simple terms. She tells us what vitamin, mineral and essential fat building blocks are needed by the mitochondria and other key structures in the brain. Then she explains what foods are good sources for those key nutrients. Over a hundred recipes are provided to help get you started on this new way of eating. A portion of the proceeds from the sale of this book will be used to fund research into the benefits of these interventions in others.
Links to More on the Wahls Diet
- Terry Wahls, M.D.
In 2003 Terry Wahls, M.D., was diagnosed with secondary progressive multiple sclerosis and soon became dependent upon a tilt-recline wheelchair. After developing and using the Wahls Protocol™, she is now able to walk through the hospital and commute
- The Wahls Foundation
The Wahls Foundation, Inc. is a nonprofit entity created May 11, 2011 whose mission is to educate the public and health-care practitioners about the benefits of an integrative approach to optimal health for those with multiple sclerosis and other chr
- UI researchers develop innovative protocol of treatment for MS patients
University of Iowa researchers, using an innovative therapy involving intensive nutrition, progressive exercise, and neuromuscular stimulation, have observed evidence of improvement in patients with secondary progressive multiple sclerosis.
Food as Medicine - Dr. Terry Wahls
An audio book by Dr. Terry Wahls describing her dietary plan for healthier eating.
Dr. Wahls summarizes her use of intensive nutrition in her recovery from severe disability due to secondary progressive multiple sclerosis. Dr. Wahls reviews the data on how poor the Standard American Diet is. She then teaches us how to eat and actions to take to ensure our mitochondria and brain cells have all the building blocks on hand for the mitochondria to generate the power we need to live and for our brain cells to do the work of being a brain. A portion of the proceeds from the sale of this CD will be used to fund research into the use of intensive nutrition in others with neurological diseases.
Food as Medicine Brain Health - Dr. Terry Wahls discusses her diet for multiple sclerosis
This video was my introduction to the Wahls Diet and the beginning of my journey of wondering if it might help me stop the progression of my transverse myelitis symptoms or possibly even reverse them. After you watch the videos describing the plan, I will tell you about my experiences switching from my previous eating habits, which included a lot of sugar, processed and fast foods, and carbohydrate to the Wahls diet, as well as the results so far.
There are six parts to this video. Be sure to watch them all to understand all of the aspects of Dr. Wahl's research and the dietary implications.
Wahls Diet Poll
Had you heard of Dr. Terry Wahls and the Wahls Diet prior to reading this webpage?
Other People Trying the Wahls Diet
Eating this way is more costly, but being healthy saves you a whole lot of money in the long run. - Dr. Terry Wahls
My Experience With Switching to the Wahls Diet
Let me start by saying that my previous diet was very unhealthy. I was addicted to caffeine and drank a minimum of two cans of either Coke or Dr.Pepper per day. I also craved sugar and carbohydrates, and ate a lot of cereal, bagels and loved cake and brownies. If you look at some of my "cheap food" lenses, you can get a good idea of the type of food I had been eating for the past seven or eight years as my illness progressed.
First, I had to get over my fears about spending money on better food. Money had been very tight ever since my husband left us, and I not only watched every penny but felt guilty if I spent anything on myself. One day while perusing my stack of medical bills, it dawned on me that I could either pay up front for healthy food or I could pay later in increased medical bills and a lower level of functioning. I decided to bite the bullet and invest in healthier food.
I still was not ready to switch from bagels to kale, but I started by simply increasing the amount of fresh fruits and vegetables I ate in the course of the day. If I ordered a sandwich at a restaurant, I had them pile on the veggies. I switched to salads and wraps from burgers and fried fish.
At the same time I was learning more about the food industry and all the chemicals and additives that are in our food supply. Some of this disgusted me so much that quitting fast food was not hard, but also not very convenient. I found it easier to carry some snacks with me so that I would not be tempted by the drive thru while I was out and about.
Gradually I switched to eating more and more organic fruits and vegetables. When the summer came, I started shopping at the farmer's market. There I found a farmer selling organic, grass-fed beef. He had a weekly special where I could purchase five pounds of beef for $25. I started buying this bundle once a month. On other weeks I might buy a roast. This would last through several meals.
When the Occupy Wall Street movement started in September, I joined a group called the People's Boycott. There I was educated about the Koch Brothers and the involvement of the huge business conglomerates that supply our industrial food chain. As I learned more about income inequality and the abuses of this unjust system, I made a decision to stop supporting this system with my money. It seemed like the perfect time to join a Community Supported Agriculture group, so that is what I did.
I get a box of fresh, locally-grown vegetables every week, along with a half-gallon of fresh-from-the-farm non-homogenized milk and a loaf of organic artisan bread. I get a pound of organic cheese every other week. I can also select other foods if desired, such as organic butter, maple syrup, local honey, organic chicken, eggs or beef.
I also stopped shopping so much at the supermarket and do what little shopping I need now at a locally owned health food store. Yes, it is more expensive, but I already made my decision that it would save money in medical costs and my health is worth the cost. Then I discovered, as I ate fewer carbs and more healthy meats and vegetables that I was satisfied longer and did not feel hungry as often. My cravings were gone. I was eating less and the financial costs began balancing out.
I am still not 100% Wahls yet. I have quit the sodas and switched to green and herbal tea. I eat no processed foods, but I still eat a big bowl of organic oatmeal every morning for breakfast. I still eat the artisan bread every week, and consume a half-gallon of milk. Still, it is a huge improvement over my previous diet, when I ate in a day about the same amount of grains and dairy that I now eat in a week.
The first week that I ate all very nutritious foods, eliminating all processed foods and sodas, I lost seven pounds. I have been eating this way about a month and have now lost 15 pounds. I am still weak and have little stamina, but I feel an inner sense of energy that I have not experienced during a relapse in the past. It is very subtle but I just do not feel exhausted all the time like I used to.
My rosacea has improved a lot. I no longer have redness and inflammation covering my nose and cheeks. I still have some flaking skin on my chin that has not yet gone away.
When I started I told myself I would stick with this and try it for six months. If I do not feel it is worthwhile in that time, I can go back to eating whatever I want. Until then I will adhere to the Wahls Diet as much as possible and report my progress here.
Time Line for My Experience With the Wahls Diet - Using the Wahls Diet for Transverse Myelitis
Here is a rough time line to document my experience using the Wahls Diet for Transverse Myelitis.
- Started changing my diet in September 2011, starting with eliminating sodas and sugar and increasing fresh fruits and vegetables. I am taking a multivitamin and 1200 mg of fish oil when I remember.
- October 2011 -- Switched from cooking with canola and olive oils to cooking only with coconut oil. Switched to organics exclusively. Increased green leafy vegetables. I am in a relapse of TM symptoms with problems walking, weakness, lack of stamina and cognitive issues. Weakness has progressed to the point that several times my legs will not support my weight at all. I spent the last of my savings to buy a mobility scooter so that I can continue my part-time job substitute teaching. Remarkably, in spite of this relapse, I am experiencing less fatigue and a lot less pain. I had chronic pain and was taking 3 or 4 ibuprofen twice a day just to take the edge off. I have been able to stop taking ibuprofen completely. I am sleeping very soundly. I have lost 15 lbs.
- November 2011 - I have gone almost gluten-free. I am still eating organic oatmeal for breakfast about 5 days a week. There is a chance this could have some gluten contamination. I also sometimes forget and do a taste test while cooking my daughter's food. I am still consuming dairy. All dairy is whole fat, grass-fed and organic. By Thanksgiving week my relapse is heading into remission. I am walking without a cane. I have little stamina, but am able to run some errands. Blood work came back mostly normal, but at high risk for diabetes. I am almost certain this is due to the poor diet I had prior to September. My protein was on the low side of normal. I am trying to eat more grass-fed or wild meats and fish. I have also started taking a few supplements: 2400 mg of fish oil with omega-3, 2000 mg Vitamin D3, B stress complex, and a multivitamin for women 50+. I can tell the next day if I forget to take my fish oil and vitamin D, because I feel so sluggish. I have lost 5 more pounds, for a total of 20 pounds lost since September.
- December 2011 - I am having a hard time sticking with the protocol during the holidays. Thanksgiving dinner did me in. I was invited to a friend's house and did not want to hurt her feelings by rejecting her food. I decided to eat just a little of anything not on the plan and skip dessert. That was a fail! I ended up eating a slice of pumpkin pie, and it was the best I had ever had!
I got right back on the diet the next day, but it seems once I slid off the next temptation was harder to resist. I have had numerous violations since then. I am trying to stick to it as closely as possible, even if I do slip up from time to time and have a slice of pizza.
It has been a rough month for me physically. I ended up in the emergency room one night with visual changes. The doctor ran numerous tests and finally decided it was related to the other neurological problems I have and suggested I may have MS, something I have been hearing for the past 15 years. The visual problems have come and gone over the past two weeks, accompanied by a severe headache. I have also had a lot more physical pain in my spine this month, possibly related to my lackadaisical attitude toward sticking to the Wahls diet. I believe eating gluten may be responsible for at least some of the spinal pain I experience. Will test this after the holidays by doing an elimination diet.
More About Terry Wahls
Wahls Diet Poll
How do you feel about kale?
Eating the Wahls Diet on a Budget
Yes, it is possible to eat healthy food on a budget! While you will not find many coupons for grass-fed meat and organic vegetables, there are many things you can do to reduce your costs. I grow some of my food in my backyard, and I am experimenting with growing some herbs in pots in my kitchen windows. I have posted a link to a website with some more ideas for saving money on your paleo foods!
- Paleo on a Budget
Some ideas for getting the most for your grocery money when eating a paleo diet.
I hope you found this webpage interesting and helpful. Please leave your questions and comments below. Do you have transverse myelitis, multiple sclerosis or a related condition? Have you tried the Wahls Diet or are you considering it? What are your thoughts about this way of eating?