After my diagnosis, I made sure to take moments alone at the hospital to learn and research EVERY single thing I could. I learned what to eat, what to avoid, what medications had the worst side effects, what my best exercise options were, and what treatments outside of western medicine would be beneficial for an MS patient. I also took time to take my mind off of the illness completely by teaching myself calligraphy, Netflix binging, having Uber Eats deliveries, journaling and reading.
I learned that cruciferous vegetables were my friends (cucumber, bok choy, kale, collard greens, brussels sprouts, any type of bean sprout) anything with high polyphenols like green tea, spices, herbs were also good choices, anything high in lycopene like tomatoes and watermelon or high in carotenoids like carrots and sweet potatoes, Omega 3 fats from wild sockeye salmon were amazing, probiotics like kefir and Greek yogurt are fantastic for gut health, complex carbs like millet and sorghum. I also read that green tea, curcumin, mustard oil, and cannabis work wonders. If you are on an essential oil regimen, check out frankincense and helichrysum.
I was grateful for the chance to be offered DMD's, but deep down, I felt it wasn't the time for me. I wanted to work hard (as I always have) holistically and with assistance from my God-sent nutritionist, Marta, who has never failed me in any of my treatment. I was sent home from the hospital with another pack of steroids to finish out my cycle for the paresthesia, and told to choose my poison (DMD). I was a bit deflated, but the following week I had a follow up call with Marta who helped me see what was necessary moving forward:
- a low saturated fat diet
- modified Wahl's protocol "paleo" diet, which we cycled or else it would not have been
sustainable
- goal was to prevent the degeneration of myelin (those lovely nerve covers that my
body so nicely destroyed). This in turn, would decrease flare ups.
- incorporate physical activity only in the A/C and hydrate, hydrate, hydrate!
- supplements after I left the hospital: woman multivitamin, vitamin B 12, folate, cod
liver oil (omega liquid), vitamin D and Florastor Plus probiotic
I prayed this would improve my quality of life, and my goal has and always will be to avoid progression of the disease the best I can. I was told to keep an ongoing health journal which I am a huge proponent of, to keep all your information and notes at your fingertips. Something to bring to all the upcoming appointments, and keep my mind at ease so I would not have to scramble to remember ALL of the THINGS. I also began seeing an angel of an acupuncturist, and started a weekly treatment plan with her to help stimulate my nerves and the stiffness in my back, and the dreaded MS HUG. Here is an explanation:
If you have multiple sclerosis, an autoimmune disease that affects the brain and spinal cord, you might have felt a band of pain around your torso. It’s often called the “MS hug.”
What It Feels Like
Like most MS symptoms, it’s different for each person. You might feel it right under your rib cage, in your chest, or anywhere between your neck and waistline. It can be:
Burning
Dull and achy pain
Hard to breathe
Pain on one side of your body
Pressure
Sharp pain
Tickling
Tightness
Tingling or pins and needles
Vibration
It can last a few seconds to a few hours, and in rare cases, a few days. People often say it’s like wearing a girdle around the middle of your body. For that reason, you may also hear it called by a number of names, like:
Banding
Girdle-band
Girdling
MS girdle
You might feel it in your head, hands, or feet instead. People with this type of sensation feel like they’re wearing tight gloves or boots.
What Causes It?
MS affects the way nerves send messages. The tightness, pain, or whatever you’re feeling results from spasms in small muscles between your ribs. The doctor will call these intercostal muscles. They hold your rib cage together and help it expand when you move, bend, or breathe. If these muscles have spasms, you feel painful, tightening pressure.
The hug is a type of nerve pain. You might hear a doctor call it dysesthesia, which means a sensation that isn't normal.
If other symptoms come on quickly at the same time, the hug can also be a sign that your MS is relapsing. Call your doctor if this happens.
What Should You Do?
If you think you’re having an MS hug, talk to your neurologist or main doctor right away. The symptoms can seem like those of a heart attack, so it’s important to make sure that’s not the case and to rule out any other causes of the pressure.
Your doctor will most likely give you an MRI to look for other things, like gallbladder problems or lung disease. MS hug can also happen to people with other rib and spinal cord conditions.
AN ACTUAL WEEK IN THE LIFE:
Hospitalized 7/20/18, and at 7/31/18, my health journal read:
"severe stiffness (what I now know as spasticity) in my feet, MS Hug (worse in the early
morning, better by 9:00am, excessive menstrual cycle bleeding"
8/1/18: "acupuncture day 3, added CBD balm on feet in PM, 95% better in feet by bedtime"
8/2/18: "30 minute Peloton ride, spastic in both feet, electric 'shocks' in upper left back and severe MS HUG"
8/3/18: "fasting bloodwork taken, feet stiff top to bottom, MS hug slightly less from 4:00-7:00PM, electric 'shock snaps' throughout entire body, tired, fatigue, onset of headache"
8/4/18: "stiffness in both feet, ankles, slight MS hug, opted for electric stimulation for 30 minutes, massaged feet with CBD balm, better at night"
8/5/18: "MS hug on left sign of rib cage, stiffness is less, bad in left foot (limping), tired"
8/6/18: "felt less stiff AM, 30 minute Peloton ride, did foam roller after, e-stim for 15 minutes"
Most of these symptoms went on until 8/23/18 where I noted, no symptoms, WOW!
But, of courseeee the symptoms started back and never ended until around 9/25/18, and then other new symptoms popped up, like an eye twitch, itchy legs, pain in hands, and knee pain. The ups and downs are all worth it, and I was ready to delve in and learn some more.