An Unexpected Diagnosis
You have to laugh. Went over to the neighbor's house the other day to deliver some mail to them and they found me lying at their front door! I had never met them and it was dark. Their front door was down 15 stairs and across a deck which had a small step down halfway across. Although I had my cane, I fell so hard down off that tiny step my shoes flew off. Talk about a memorable entrance.
My legs began to feel funny
It all began in the winter of 2011 when I lived in a very tiny home. I would come home after work and I would often just sit. I was overweight but I was actually very active as I worked 32 hours a week in a high school library, coached two Varsity sports in the fall and spring plus worked as a sports reporter year round and worked weekends at a local hotel. In the summer I worked at a boat landing for the DNR. I was 53 years old at the time. That winter my legs began to feel funny. They felt heavy and dense and didn’t work real well but I still remained active. A job opportunity came up and I recertified as a lifeguard and swim instructor to try and get the job.
Anything I said was dismissed
So as you can see athletics were a big part of my life. Every time I went to the doctor, I tried to explain what was going on with my legs. Since I was overweight at the time, menopausal, and female I feel that anything I said was dismissed. It was not until the spring of 2018 when I mentioned to my physician's assistant that I liked parking by the carts at the grocery store that the doctors started looking at things differently. A year earlier I was sent to the emergency room because my blood pressure was dangerously high at 213/110. They performed a head MRI to make sure I didn’t have a stroke and I had told the ER doctor about my legs. In fact, I told every doctor I saw. He came into the room and said, “...Well the good news is you don’t have MS.”
I started on Ocrevus
After a back x-ray in 2018 which determined I had a small amount of arthritis, I was scheduled to see a neurologist. That process was painfully slow. I had a full body MRI in August, an appointment I had to wait four months for, and I was not diagnosed as having MS until January following a lumbar puncture. By then my balance was compromised, I walked like a drunk, and the disease had taken hold. My neurologist tells me I have PPMS. I started the DMT Ocrevus earlier this year. I have yet to decide if the drug is working. I feel like I’ve gotten worse during the past year. I have fallen eight times in the last year, four times in the last month.
It is perplexing to me how this happened
My question is would things have been different if somebody would’ve listened and started treatment earlier? I have no pain and I’ve been told if I would’ve mentioned pain, a diagnosis may have come earlier. Some say is caused by a lack of Vitamin D - I spent my life outdoors soaking up the sun as a lifeguard, swimming instructor, and coach, I was outside from March to November every year. I golfed, biked and spent time on the Mississippi River or at the lake. I ate whole, fresh foods, did not drink much, never smoked, exercised regularly and battled my weight every step of the way. It is perplexing to me how this happened, I was never sick, in fact, I’ve called in sick once during the last 40 years until now when it’s more of a mental health day. I was advised to join a support group. Big mistake for me. I see this as my new normal and all I saw in the groups was a lot of whining! I’ve lost 120 lbs and my legs still don’t work. My motto, Soldier on, find new things to do and keep my mind and body active!
Do you celebrate your MS Anniversary?