My MS Story

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.