So I reported in my 1st week with MS blog post that I was also going to seek treatment at Soul 7 including all my other holistic practices. The healing technology facility in Toronto has the use of an Electromagnetic device called ONDAMED® that I’ve received 3 treatments on so far. If I had to explain what it does in 3 bullet points the easiest way would be:
1. The ONDAMED Biofeedback System applies electromagnetic impulses in rhythmic sequences. 2. The changing of the magnetic field structure of the impulse induces reactions in the body. 3. The impulses induce effects that stimulate the autoregulation of the body.
“The pilot study analyzed the safety of the ONDAMED® Pulsed Electromagnetic Field device. The treatment protocol was only 3 sessions since the purpose of the study was to document safety only. What was unexpected is that a significant reduction in pain was reported with just 3 sessions. The recommended protocol for ONDAMED® is at least 10-12 treatments.”
Then I wanted to find case studies specifically for MS treatments. Has this worked on others with MS? A patient Deirdre had ONDAMED® treatments from the 13th of February till the 15th of May 2013. It was very apparent that there had been many improvements in Deirdre over this short time.
Improved sense of wellbeing/mood – clear head
Better digestive system
Increased balance and coordination -ie. Deirdre can now again dress and undress and do her buttons. She can blow dry her hair. She can again stand while showering. Deirdre can bend to load the washing machine and even squat. And Deirdre is now again wearing her runners and is able to lift her feet so as they don’t catch the floor.
Here’s how the process has worked for me so far. On the first day, I was scanned for energy blockages. A neck device was placed around my neck (see selfie below) and Bob, the founder of Soul 7, applied electromagnetic resonance to my body while feeling pulse spikes. The pulse spikes would indicate energy blockages in my body.
The machine managed to alert us to blockages in my head, neck & intestines. The blockages correspond to frequency numbers that I would then be treated at later. I found this fascinating because my MS lesions are in my brain, and neck and I had been dealing with intestinal problems after the steroid treatment. The next time I came in I had a scan that was done to find the most “important” blockage on my left & right side. On my second treatment, we started treating both of those areas.
On my third treatment, we decided to treat my head & intestine area as I’ve been dealing with gastrointestinal problems. I’m happy to report that based on food changes & the ONDAMED® treatments my intestinal problems are slowly getting better. I’m excited to receive more treatments and to record my progress on symptoms.
If you’re curious about finding out more here is the website for ONDAMED® & Soul 7.
So my next avenue of care was to delve into what I’m using to fuel my body. I am a big fan of clean eating and most people when looking at my weekly meal plan would say I’m the healthiest person they know. But this doesn’t mean that I’m eating to heal my body of an autoimmune disorder & its symptoms. After my diagnosis post, I received a million and one suggestions of what to do. They are overwhelming & welcomed all at once. Although I love the information it has been a lot and I need to sift through it.
One of the first videos I watched is by Dr. Terry Wahls called Minding Your Mitochondria
I downloaded her book The Wahls Protocol onto my Kobo to dive into. So far I love her straightforward writing approach and the way she explains science to a “lay person”. My Naturopath has also recommended that I read Grain Brain. There are so many books out there so I’ll slowly make my way through them.
My next step was to contact a Registered Holistic Nutritionist. I was recommended to talk to Chantale Michaud from Eat Heal Love. She was diagnosed with MS in 2001 and has been relapse-free since 2007. She decided to become a holistic nutritionist and went back to school. She currently practices in Guelph, Ontario but does Skype consultations. I booked a mini nutrition consultation because I have such a good regime that I just need to know what to tweak. What needs to go and what can stay.
These tips are built for me & what I currently do. I have paid for her services so please do yourself a favour if you are reading this and consult an expert yourself and don’t just do what works for me as I already incorporate so many healthy eating habits.
Here are my top 10 tips that I’ll be adopting into my meal plan (because I don’t like saying the word diet.)
1. Avoid flax seeds & hemp oil during symptoms/episodes as they bind to nutrients and make it harder for my body to absorb them.
2. More Omega 3 vs 6 & 9. In my Naturopath appointment post I mentioned that I’ll be incorporating NutraSea + D back into my green smoothie.
3. Less steak & more fish. I eat flank steak basically every day so I need to try and reduce that to 3 times a week and up fish to at least 4 times a week. Red meat can be very acidic in your body and eating more fish will give me the omega 3s I need for anti-inflammatory properties.
4. Add more seaweed, which contains iodine into my diet. This information also comes from Dr. Wahls so I’ve already started incorporating this into my weekly meal plan with roasted seaweed snack packs. I used to use Spirulina powder so this will be easy to incorporate into my green shakes.
5. Don’t drink water with meals so my enzymes can properly digest my food. I used to take enzymes with my protein meals so I may start doing this again with my steak & chicken meals.
6. My naturopath recommended 8,000 IUs a day and Chantale recommended I split the dosage into 3 times a day vs. just twice a day. I was taking 4,000 at breakfast and 4,000 at dinner for ease of memory.
7. Add Coenzyme Q10 back into my supplement routine. Our bodies use it to produce energy for cell growth and maintenance. It also functions as an antioxidant, which protects the body from damage caused by harmful molecules. I have a list of foods to delve into or I can look into supplementation.
8. Cut nightshade vegetables out while I’m experiencing gastro intestinal problems. Bye bye tomatoes & peppers.
9. Incorporate shots of tart cherry juice or cook with turmeric for their anti-inflammatory properties. When cooking with turmeric I need to pair with black pepper for absorption.
10. My blood work post steroid treatment showed pre-diabetic properties to it so we discussed what I could eat to support my pancreas. I’m going to cook with a bit more garlic, get some artichokes for next week and I have a big cabbage I need to do something with!
Before the session she sent me a document on “Living & Thriving with MS – Quick Start Guide Part 2” and on “Autoimmune Disease & the Leaking Gut Connection” to review before the consultation. Post Consultation she sent me a review of the steps I need to take and a list of recipes (see below) I can use. She was so worth the cost!
Banana Nut Millet Porridge
Quinoa Breakfast Bowl
Banana Nut Blueberry Muffins
Kale Omelette with parsley and green onions
Roasted Cauliflower Soup
Spaghetti Squash Pad Thai
Coconut Curry Sweet Potato Lentil Stew
Tabouli Quinoa Salad
Apple Carrot Coleslaw
Mixed Veggie Leafy Green Salad with Cucumber Dressing
Sweet Potato Salad
Baked Lemon Cod with Asparagus
Roasted Garlic Cauliflower Hemp Seed Dip
Apple Slices with Almond Butter
Do you eat an anti-inflammatory diet? What are some of your best tips for nutrition?
Monday was a busy day for me. I woke up feeling still slightly foggy and with a nice headache that felt like it could’ve turned into a migraine. I had received an Intro doTERRA kit from Ange of Hol:Fit which has a peppermint essential oil in it. I’ve read that this is great for easing headache symptoms so I put some on my temples and along my hairline. I smelled like peppermint for the rest of the day but it worked!
I visited my neurologist, Dr. Baskind, at his office on Monday afternoon. Alas, there was no bow this time. He had a senior resident with him so I got to tell the quick story of how I was diagnosed and explain that my symptoms have dissipated. The feeling has returned to the entire right side of my body except for my hand (which is still a bit pin & needly). As I write this post it’s almost completely gone so I’m hoping my symptoms are cleared by the end of the week. I pulled out the extensive blood work my Naturopath had done so he could take a look and then my notebook with questions. I’m going to write them down in case a recently diagnosed MS patient ever comes across this blog post and is curious about what to ask.
1. How many MS patients do you currently treat? Do you specialize in MS or are you a general neurologist? He is treating around 60 patients and is a general neurologist. He even said he’d be willing to refer me to the MS clinic at St. Mike’s where they have specialists.
2. What type of MS do I have? I started my research on the MS Society of Canada webpage. I have the earliest form which is called Clinically Isolated Syndrome as I’ve only had one attack. Based on my MRIs and the number of lesions I fit the McDonald Criteria.
3. I asked how did he rule out other neuro disorders? The MS Society page also explains that your doctor should rule out NMO, ADEM, Lyme disease, CFS & Lupus. He explained that my symptoms & MRI scans are indicative of MS only. He did say I could receive a spinal tap but I said no I’m ok I’ve already accepted my diagnosis. I will go to the MS Clinic for a second opinion because I believe that’s smart but I really don’t want a needle in my spine.
3. Are these symptoms I experienced over the past week normal for being on the steroid treatments? Being tired, shortness of breath, and having a foggy brain are all side effects of the treatment and nothing was out of the ordinary.
4. Where are the lesions on my brain? What am I at risk for? He showed me where my lesions are. The majority of them are on the corpus callosum. This is a thick band of nerve fibres that divide the left and the right brain. He told me it’s a pretty useless part of the brain. Although I’ve now read that this part of the brain transfers motor, sensory, and cognitive information between the brain hemispheres. Currently, these lesions are asymptomatic. I asked what type of symptoms should I be wary of in the future and he said it’s hard to tell.
4. What type of MS am I at risk for moving forward? There are four types of MS. Relapse-remitting (RRMS), secondary-progressive (SPMS) and primary-progressive (PPMS) and progressive-relapsing (PRMS). I’ve decided I’m never going to get these types and will live with MS for the rest of my life. A doctor can’t be sure of what you’re at risk for moving forward but I was told I don’t have risk factors. I was told that risk factors for developing more severe cases usually present themselves in males, those with unhealthy lifestyles and other races. I haven’t done enough research on this but I believe that based on my healthy lifestyle and how I’m going to treat this holistically I won’t have to worry about it progressing.
5. What activities can I do? Yes I know I asked about fitness even before treatment. My exact words were… “Can I jump off a 10-foot wall?” My neurologist paused and asked me why this was important? “Oh, I’m an Obstacle Course Racer!” I was so worried about impact activities but I don’t have problems with my spine it’s with my central nervous system so I’ve been cleared for all crazy activities and of course must just listen to my body. I went for my first run since the beginning of October and though it was short and sweet and hard, it was glorious. Just look at my smile!
6. What treatment are you recommending moving forward? There are so many options from IV treatment, to self-injectables to oral pills. This is all going to be impacted by my health insurance and my research of clinical studies and to be honest side effects so onwards I go into the world of conventional medicine.
I also had the chance to discuss with a Registered Holistic Nutritionist what I can do in my meal plan weekly but this post is getting long so I’ll post that tomorrow.
So on Tuesday, December 2nd after receiving my first steroid IV treatment in the hospital I was sent home to sleep in the comfort of my bed. Which was glorious! I was more excited to brush my teeth than anything.
My immediate treatment was to go through 3 doses of Solu-Medrol by IV (once in the hospital) and at home over the next two days. They shipped me the medication and an IV pole and arranged for a nurse to come in every day for treatment. She would hook IVAN the IV (yes I named him) to the medication on the IV pole and the drug would run through my system for an hour before she unhooked me and left. Solu-Medrol is a corticosteroid. It works by modifying the body’s immune response to various conditions and decreasing inflammation. We definitely made jokes on social media with my fitness world peeps that I was going to get jacked on steroids! Again I always have to look for humour.
The hospital sent my blood work off to check for viruses that could be sitting dormant in my body. Being on the steroid treatment and lowering my immune system meant that if I had dormant viruses in my body they could now take effect. Fortunately Hep A, C & HIV tests all came back negative. I was also asked to go to my family doctor for a TB test which also came back negative. Yay for positive news!
Over the next three days, I felt ok. I rested on my sofa bed, which my mom was sleeping on while staying with me, and called in for every meeting at work that I could so I could listen in or contribute. I wanted to make sure I didn’t lose any details at work even while I was resting and my office was very accommodating to calling me in. My last IV treatment was Thursday and I was so happy to get rid of IVAN. Friday, my mom and I had to run a few errands. We went to the doctor’s office for the TB test results, we had loaded up a bunch of used books and dropped them off at the used book store, drove down to Kensington Market for probiotics at my favourite health food store, grabbed healthy grass-fed meat at Sanagan’s meat locker and takeout from Fresh on Eglinton and then drove by the hospital to get my MRI scans on CD. By the time we got home, I was utterly exhausted and couldn’t explain it. I’m used to functioning at high levels and I didn’t feel like I was exerting myself but I do understand that my body needs rest more than ever.
Later that night I felt like I could barely get a breath in. I felt like my chest was being squeezed. All weekend my side effect symptoms were getting worse. I felt moody. Happy one minute and tired and sad the next. I was still having shortness of breath even while resting. I felt like I had a brain fog & I was having trouble thinking rationally. So I’d head to bed at 8 pm every night and sleep it off. Monday I was feeling better and I wanted to get back to the office. My only worry was that the Solu-Medrol solution may lower the ability of my body to fight infection. I was told to avoid contact with people who have colds or infections. It’s flu season in Toronto and everyone and their mother seems to be sick so I was a bit hesitant to join the real world again. I managed to get back into the office but got really tired and had to leave early most days my first week back.
In addition to immediate steroid therapy, I sprang into making appointments with many of my health care providers. I made an appointment with my Naturopath to discuss supplements, reached out to a Registered Holistic Nutritionist for a consultation on what I eat, made my follow up appointment with my Neurologist & emailed Soul 7 who I had visited back in October for a tour of their new healing facility in Yorkville. I believe in holistic health. I believe that I need an MS army of specialists to treat me and I intend on getting total care instead of just one avenue of care. Below are the Naturopath & Healing Wellness tactics I’m exploring.
Monday morning I went to the blood clinic early for blood work for my Naturopath. I’m seriously tired of needles. Wednesday morning I went to see her in the morning to review the blood work results. I also brought a bag with all my supplements in them for a full ingredient review. The good news is that the majority of my supplements are great. I need to take some of the supplements more consistently but I’m glad I have an action plan now.
Traumeel: I just recently bought oral pills which help in reducing inflammation. I take 3 daily.
NutraSea + D: I bought a small bottle so I can add a spoon of this to my green smoothies. I haven’t been diligent enough with getting fish oil in my diet and this has added Vitamin D to it.
I’m almost finished with my Ubermag so I’ll be looking for a new brand after this bottle is done as it’s too difficult to find in Canada.
The only supplement I have to put on hold at the moment is ReloraPlex which I was taking to balance my high cortisol levels.
The only new recommended product I should start taking is Pure Encapsulations – NAC which is a free radical scavenger that helps create glutathione in the body. Glutathione is used for maintaining the body’s defence system (immune system) which I need to build up so it stops attacking my myelin.
Magnum Primer: I take one pack daily with my red meat meal of the day. My naturopath loves this product and thinks it’s the perfect general health maintenance product on the market. It has the Omegas my body needs, a digestive enzyme for my gut health and is loaded with a ton of great vitamins & minerals.
In other great news, we took a deep dive into all my Magnum Supplements to ensure I’m ok to start taking them again (I’ve been off a few for the past 3 weeks), especially when I’m able to return to the gym. I’m cleared to take DNA (strength product) & Rocket Science (energy) pre-workout, Hi5 (BCAAs) intra-workout and Quattro (protein) & G (glutamine) post-workout. Glutamine will be so important for ensuring my gut health is increased post the steroid treatment. I can try Volume (muscle pump product) when I return to the gym. The most interesting thing we found is that Mimic (insulin mimicker) is actually imperative for me to take right now. My body is reacting to this diagnosis with massive stress and it thinks it’s diabetic based on my blood work so Mimic will be instrumental for me to regulate my insulin.
Disclaimer: This is a vitamin/supplement action plan reviewed and suggested by my naturopath. Please see your health care professionals before taking anything new.
Soul 7 Healing Technologies
Thursday evening I went to Soul 7 to consult with Bob Berman, the founder & owner. We sat and chatted for 30 mins about my diagnosis, symptoms and the technology that Soul 7 has. I remember everything he told me during my first visit but we talked specifically about how they can help with an autoimmune disease. He used the ONDAMED biofeedback machine on me to scan where I am having what he calls energy blockages.
What fascinates me is that he asked me to not tell him where the lesions are on my body. He placed a collar around my neck and the machine releases subtle stimulation. Bob felt my pulse and if it spiked he would write down the number associated with the spike. So without knowing where the MS lesions are the machine was able to identify where the lesions are on my body. He is going to treat me with the machine over a series of 20 appointments. In the meantime, we acknowledged that I needed to start boosting my immune system back up to heal itself. I spent 30 mins on the Pulsed Electro-Magnetic Field Therapy (PEMF) bed. This technology is FDA approved for reducing pain and tissue swelling. While napping on the bed I also listened to a 20-minute guided visualization created by Dr. Clifford Saunders, Ph.D. that addresses the mind-body connection of dealing with stress.
After this treatment was done I moved over to take another 20-minute nap on the Neuro Muscular Vibration Therapy bed. I had tried the larger beds last time I was here and raved about the most relaxing nap ever. The bed emits multi-frequency acoustic vibrations which transmit suggested muscular and mental commands through the central, sympathetic and parasympathetic nervous systems. They placed a heating pad on top of me to keep my core body temperature high and after the two naps, I was beyond relaxed.
I left feeling calm and peaceful and I’m excited to see how the treatments alleviate my symptoms and help me heal.
The moment the doctor said “there is an abnormality on the MRI” my world stopped for a split second. He started to turn around and was pointing to the back of his neck. I stopped him and said “wait, did you say abnormality?” The next words out of his mouth were “there is a demyelination on the c spine, which is indicative of MS but not conclusive.” My next words were strong and harsh. It’s indicative but not conclusive? So why would you say that to me? Why would you put that worry in my head if it’s not a firm diagnosis? What are our next steps?
It was 10pm, I had been in the emergency room for 12 hours. I had barely had anything to eat. I had been hooked up to an IV that was painful and had to sit in horribly hard chairs in the yellow area waiting room of North York hospital. The chairs made my symptoms worse and I just wanted my bed. But let me back up to the beginning of what is called an “episode”.
I woke up Tuesday, Nov 25 with numb, tingling fingers in my right hand. I thought I had slept funny on my arm and they were simply asleep. I packed my gym & food bag and headed off to the gym. I went through a back workout, stretched, foam rolled and acu balled my scapula & traps thinking I had a pinched nerve somewhere in my neck. Throughout the day my upper torso (major pec/boob) went numb and then my abs & back (all on my right side). I made a massage appt for Thurs night hoping my RMT could get rid of the pinched nerve. Friday I woke up and nothing had changed except now my right glute had gone numb too. A coworker suggested I go see a nearby chiropractor. I saw him Friday afternoon and after a series of neuro tests (pin & dull pricks, body motions, reflexes & vibration tests) he urged me to go to a walk in clinic for blood work and x rays. He was hesitant to do an adjustment on me without full knowledge of what was going on internally. We also discussed my family history of MS (my father has it) so I immediately ran to the closest walk in clinic to get blood work done & get an x ray requisition. The xray clinic had already closed so I would wait out the weekend and go Monday. When I woke up on Monday my right leg & foot had gone numb so I just decided to get myself to the hospital where they had specialists and diagnostic tests at their fingertips.
So MS was always at the back of my mind but I was keeping an open and clear head and just seeking an actual diagnosis. I didn’t google my symptoms. I texted my dad about them but I went to the hospital to rationally solve the mystery. Monday morning I had a CAT scan. The on call emergency doctor after seeing that it was negative was about to send me home until I urged him to get to the bottom of it. He sent me off for an MRI. I don’t think I would have been diagnosed unless I had urged the doctor to dig deeper. I am certainly beyond grateful that I live in a country where my health care is free. Where I can walk into a hospital and have expensive tests at the disposal of the doctors. I’m also tenacious enough to continue to request help.
After the MRI results came back I waited another 4 hours. I asked to be unhooked from my IV so I could jail break from the emergency room and run to Tim Hortons in the hospital for food. I was starved and cranky. I finally saw an Internist. This is the doctor who’s words “you potentially have MS” rocked me. The doctor for sure paused for effect and waited for me to cry. So I did, like a good dramatic patient. Silent tears ran down my face. However my diagnosis still wasn’t conclusive. He wanted me to stay overnight for more tests so I agreed. I was put on a gurney in the hallway by the security guards and a room with a drug addict coming off a high. The night was off to a great start. I was alone and scared. I started madly texting my friends for support. I had gone the whole day being an Alpha Female and then you realize you just need your people.
My friend Katie came to my rescue with contact solution & a case so I could take out my contacts which had dried to my eyes while crying, granola bars and a vitamin water which I chugged at 3 am! We hugged, cried really quickly and then began talking about boys in front of 5 security guards that were definitely listening. How to cope with bad news 101 by Robyn & Katie. A tech then rolled my bed off to a different section of the ER while I sat crossed legged and started singing “I can show you the world” and said “thank you for my magic carpet ride!” I like jokes in serious situations. Katie & I laughed a bit longer and then I sent her home to get a good night sleep for work. The highlight of my lonely overnight hallway stay under bright lights in a busy area by the nurse’s station was Neda the nurse. She comforted me as she could, took my vitals, found me jello and told me she’d be my family for the night. Despite lovely people I still proceeded to have a sleepless tear filled night. North York can you please invest in 3 ply tissue because your quick wipes did a number on my face and I was a swollen dry skin mess in the morning. I requested an ice pack to unswell the eyes because really I was more worried about Dr. Mc Dreamy walking by and seeing my swollen face. All of a sudden I heard “Here I brought you a snack”. I thought my lovely nurse was even more lovely until my friend Emily came into sight in my peripherals and I laughed, cried and hugged her. She had brought me a healthy smoothie complete with kale that got stuck in my teeth for Dr. Mc Dreamy to see later.
I was rolled to the MRI at 9:30 for my second MRI. I know I’m beyond lucky to have received this. This time they did my head & neck and inserted a tracing agent into my bloodstream. I came out of that MRI tunnel rocked with a massive migraine. That machine vibrates & emits high pitched noises and just decided to rock my sleepless head hard. I was wheeled down the hall crying from excruciating pain to find my sister love Aubrie, who was dressed to the nines, holding tea for me. We sat, cried, laughed, she marched off to bed control to demand a room and came back to hear a doctor say “Is Robyn Baldwin back?” My hand shot up, we whipped our heads around to see a short doctor with a bowtie on. Aubrie yelled “BOWTIE” and he walked over while we giggled our heads off. I will give myself credit for always finding the fun in any situation. He examined me in the hallway but was nice enough to ask a nurse to put me in an examination room so I was no longer in the hallway for my diagnosis. I was also seen by a primary care physician resident who explain potential treatment and the neurologist came back in to give me the full diagnosis.
I have an inflammation on the C4-C5 of my spine & several spots in my brain (over 20 according to the formal report) and based on all these spots & my episode symptoms he can conclude that I have MS. I didn’t cry. Ok maybe one single tear. I asked calm questions. I found out the course of immediate treatment, asked about side effects and talked about follow up appointments. Aubrie found my mom who had driven from Ottawa that morning coming into the emergency room. They opened the door and I saw my mom and said all choked up “Mommy I have MS” and started crying again. But that was the last time I cried. It was time to buck up and deal with this shit. I still haven’t had a good cry. I thought the non stop tear filled night on the gurney was enough of a pity party. I had to buck up and deal with this shiat.
They wheeled me upstairs to a semi private room, I met three different nurses. They finally landed on a perky nurse because the serious Russian one and I just didn’t get each other. She just wouldn’t laugh at my jokes. Aubrie went to Tims to grab food for us and we got a little giddy about donuts. I met with the primary care physician & his resident (who had seen me downstairs in the ER). He explained I could leave the hospital and sleep in my own bed tonight after my first steroid IV treatment. They would arrange for an in home care nurse to come to me for the next two days. My friend Chivon arrived with moisturizer for my dried up face, green juice & a salad. Do my friends know me or what? I got my first steroid IV treatment to attack my immune system, put on my clothes and my mom and I left the hospital to get to the comforts of my condo.
That is the 48 hours all encompassing. I learned that I’m thankful I have the tenacity to know something was wrong and seek the best help I could get. I’m beyond grateful for my friends in person & on social media. It really is lonely in a hospital and despite me being an independent female having 4 friends keep me busy, share laughs and bring me simple things were beyond heart warming and I owe these ladies alot. For my mother, who at a moment’s notice will always rush to my side and for a social media world that as I shared bits and pieces of my journey gave me encouraging words and then have now flooded my walls, picture comments & sent me hundreds of private messages. I cherish every single one of them and can’t wait to return each one.
I am now an MS Warrior. I have been diagnosed but this isn’t the verdict of what my life will become. I need to get rid of this pesky numb right body and then attack how I am going to treat this disease going forward. This is now a part of me but I will not let it define me or be how I introduce myself to the world. I’m glad I can now connect with a new community of those living with the disease because that is what I intend to do live the fuck (sorry mom when you read this) out of life just as I always have but with a renewed vigour. I’m going to live with this as my sidekick. Some days it may get the best of me but I’m way too Alpha to let this be something that drags me down from living this epic life that I love.
If you’ve made it this far. Thank you for reading my story and supporting me.