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What MS looks like for me

Amy · March 2, 2020 · 1 Comment

My first MS flare lasted from May – July of 2017 (read about my MS diagnosis). My symptoms were fatigue, cognition issues, vision problems, face numbness, hard to swallow, and tingling legs. These symptoms weren’t happening all at once, but some days were worse than others. I did a 5 day IV steroid treatment and that helped with a lot of the symptoms. Fortunately I have been in remission since my diagnosis. Relapsing – Remitting MS does not mean you are symptom free when you’re in remission. You have your good days and what I call my “MS days”.

MS Symptoms

I consider myself very fortunate when it comes to MS symptoms. I am grateful every day I can walk, see, swallow, and speak. My rotation of MS symptoms include fatigue, low energy, brain fog, pain in my eyes, dexterity challenges, weird things with my feet, poor balance, headaches, and anxiety. These symptoms show up sometimes due to lack of sleep, stress, something I ate, or it’s Tuesday. There is no predictability to this disease.

The Spoon Theory

The hardest thing for me is working around my limited amount of energy. In my mind, I have many things I want to accomplish over a weekend. In reality, I can only accomplish a third of those things because I have to ration my energy. If I go grocery shopping on a Saturday morning, I am pretty much out of energy the rest of the day and will need a nap. If I have something planned on a Sunday evening, I need to rest Sunday during the day to store up my energy. Have you heard of a Spoonie? The spoon theory was developed by Christine Miserandino and uses spoons as a unit of energy. People with chronic illness have a limited number of spoons in a day. I have been known to cancel plans at the last minute because I don’t have any spoons left.

Symptom Management

While this disease is unpredictable, managing my MS symptoms with diet and lifestyle contribute to me living my best life. I eat a nutrient dense diet following principles from the AIP (Autoimmune Protocol) and the Wahls Protocol. I have identified foods I’m sensitive to (such as eggs and nuts) and foods that make my body feel good (like organ meat and fish).

Lifestyle habits are harder for me to maintain than a nutrient dense diet, but they have the largest impact to my overall well being. It is essential I have good sleep and stress management to feel my best. I experience balance issues and brain fog on days when I didn’t get enough sleep. I call them my ‘wobbly days’.

Meditation, breathing exercises, nature, and laughter help with managing stress. Stress is a huge trigger for MS and life is going to be stressful. Stress management is an area that I continuously work on improving.

My team of professionals include a functional doctor, a chiropractor, a MS specialist, and massage therapist. Each of these professionals play a key role in my overall health and managing MS. While this disease is unpredictable, managing my MS symptoms with diet and lifestyle contribute to me living my best life.

“But you don’t look sick”

The symptoms I experience with MS are all invisible (sometimes I have a certain swagger when my foot is acting up). It’s not uncommon for people to say things like “but you don’t look sick” or “you would never know you have…”. I know these sentiments come from a good place but can be offensive to those with invisible illness. It somehow diminishes the challenges I face with a disease that cannot be seen.

My motivation for starting this blog is to spread awareness and connect with others that may face similar challenges. Everyone with MS faces different challenges but we are all warriors.

My MS Story

Amy · February 23, 2020 · 3 Comments

I received my diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS) in May 2017. Here is my MS story.

My first MS flare began in early 2017, although I wasn’t aware at the time. My symptoms started with fatigue, tingling down my legs, and intense pain in my left eye. I went to a chiropractor thinking the tingling down my legs were related to my spine issues.

I went to see an urgent care doctor, an optometrist, and an ophthalmologist about my eye. Urgent care doctor said I had an infected tear duct and prescribed antibiotics. The optometrist showed me how to wash my eyelids because I had “crusty eyes”. He told me to come back in 2 weeks and he would update my prescription in my glasses. After I left that appointment, I knew something wasn’t right.

The ophthalmologist said there wasn’t anything wrong with my eyes and I needed to see a neurologist because it could be MS. He said it so nonchalantly like I needed to go see a doctor for a cold. I could barely breath and wanted out of that office. I was terrified when I went to my car and called my husband and then cried a lot of tears.

I was familiar with MS because in 2010 I had a series of weird health issues and an MRI report said, ‘possible MS’. I went to two different neurologist and they both concurred it was not MS. I hadn’t thought much of it again until the visit to the ophthalmologist. (Not familiar with MS? Here is some good information.)

Visit to a neurologist

I began to lose vision in my left eye and scheduled an appointment to see a neurologist. He scheduled an MRI which required a 2 week wait because he was out of the office. I did not feel confident in this neurologist and made another appointment at a different neurologist. The new neurologist was socially awkward and prescribed 5 days of IV steroids, without confirmation of my diagnosis. He also told me it could be MS or it could be something worse. Great.

It looks like MS, smells like MS, must be MS”
– Dr Jerk

My husband went with me to my follow up appointment with the MRI results. I was a nervous wreck because after googling what it could be, if not MS, were not good options. The doctor was late coming in and the first thing he said “Did you do the steroids?” I told him I wanted to know what was wrong before I took medication. He shook his head then pulled up my brain scans and started showing me things and talking a lot. My heart was racing and I asked, “Is it MS?”. He said this exactly “It looks like MS, smells like MS, must be MS.”

I looked at my husband and almost started to laugh. It was so absurd to me. This man just gave me a life changing diagnosis and this is how he told me? He took no blood work and told me to start taking a MS drug that he recommended. Umm, nope. Never went back to see him.

Time to take steroids

I called his office a few days later to get the steroid IV prescribed as my flare continued to get worse. My face was going numb, I couldn’t process information, hard time swallowing, very emotional and my vision was very bad in my left eye. The steroids helped and my vision eventually came back in my eye. I didn’t understand everything that was happening at the time, but it was my first MS flare that lasted a couple months. Getting the IV steroids was scary and my first reality check of this awful disease.

I found a great MS Specialist 2 months later. During this time, I also found a new world with podcasts about people with autoimmune diseases changing their lives through diet and lifestyle. In July 2017, I made changes to my diet and changed habits to help me heal. I still have MS and MS symptoms, but my body is healing. This is how Amy’s Habits to Heal was born.