Susan’s Story (Multiple Sclerosis)

The First Signs
On Thursday, August 26, 2004, I woke up with a slight pain above my right eyelid along with blurriness in my right eye and a headache. I called my family doctor and he told me if it wasn’t better by Friday to call back. When he called me back on Friday afternoon to check in and the symptoms had not subsided, he made arrangements for his friend, an ophthalmologist, to meet me in his office Saturday morning. The doctor noticed my optic nerve was swollen, and I needed an MRI of my brain and eye orbit. I had these done that following Monday, but nothing showed up since it was done without contrast. The conclusion was that my sinus infection (which I often got) had traveled to my optic nerve. At the time, I was relieved since I knew they suspected MS or a brain tumor. I was given three days of steroids and got my vision back, but I had some difficulty going cold turkey after 3 days of strong steroids; I couldn’t sleep, had an ants-in-the-pants feeling most of the time, and used bad language which was very out of character for me. Despite this, things proceeded as usual until…

The Diagnosis
On the same date in August 2009, I was in a class to renew my teaching license and noticed my vision was blurry once again. I have a neighbor who is a neurosurgeon whom I contacted at the time, and he scheduled me for an MRI, however this round with contrast, which ultimately showed MS. I was devastated. I had a 12 and 15 year-old and was working as a substitute teacher. I made the mistake of calling a local support group. The person I spoke to was incredibly discouraging and described every possible negative outcome I could expect to encounter, including telling me I would inevitably be in diapers and a wheelchair. After my official diagnosis, I was placed on a very low dose of steroids due to my previous reaction to them, and only regained my vision to 20/30.

Management
I took Avonex weekly shots for about 3 years, but every week had a reaction the next day, often manifesting as flu-like symptoms. I was told many times that it gets better with time, but for me it never did. I went to three neurologists before I found Connie at the MS Center. She is a nurse practitioner that only deals with MS. She recently turned 70, and is about to retire so I will have to find another doctor (I will miss you, Connie!). She truly listened to me when I advocated for my health and worked with me in weaning off of medication, with the requirement that I had an MRI every 6 months. The first MRI showed just one or a half of one new lesion, but after another 6 months, no new lesions were detected. We decided to proceed with a natural approach using supplements as management. Additionally, I ended up finding a support group that I enjoy and is very positive. The group is called “U Look So Good”.

My Life Today
To this day, the only MS symptom I experience is fatigue, and who knows if that is from MS or just life. I am doing great- I have remained off of medication, and have had no new lesions in the last 6 years. People don’t know I have MS unless I tell them. I walk about a mile most days, do yoga, and participate in bone builder exercises. I try to keep my mind active by playing mahjongg and doing word searches, and I enjoy reading and theater. My husband hopes to retire sometime soon, and I look forward to traveling. I wanted to share my story to offer hope to those with recent diagnoses. It is easy to get lost in the negativity at the beginning of your MS journey, but I am here to tell you not to give up, to trust your body and do your own research, and never stop advocating for your own health.

Susan
United States
Submitted 03/28/2021

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.