Facing the storm: being diagnosed with MS
My personal story: on being diagnosed with MS
Being diagnosed with MS often takes years of misdiagnosis. This is Ronna Whitehead’s personal story of how she was diagnosed with MS.
This storm has nothing to do with rain, lightning, or tornadoes. My father was in and out of the hospital with congestive heart failure. He is the toughest man I know, and his determination to face this had given us all strength. I had been going to court with my divorce and was happy that this was almost over. My house had been hit by a super burst storm that made it look like swiss cheese on the outside, but it was getting fixed, although finding the right contractors was stressful. It seemed like one trying thing after another, but I kept going, and I kept smiling.
Then the entire right side of my body went numb. From the top of my head down to my toes. It was like I was split down the middle with one regular side, and one side was feeling numb and tingling. I had no idea what was happening.
I ended up in the emergency room. It was interesting watching the staff run around to hook me up to EKG machines and taking my blood pressure. I wasn’t hurting, and I didn’t feel bad, so how could it be that serious? After a CAT scan and a phlebotomist that I like to call vampire, taking ten vials of blood from my arm, a neurologist came to see me with three possible diagnoses.
First was a blood clot in the pons of my brain stem that may have been caused by a stroke – scary. After all, don’t blood clots in the brain kill people? The second was an inoperable tumor. Finally, it was Multiple Sclerosis. We knew that with MS, people end up being in a wheelchair for the rest of their life. It was hard to believe that a stroke or blood clot sounded like the best option.
I felt alone. Something was happening, and I didn’t know what it was. What was the reasoning behind the hospital stay? I wasn’t hurting, I just have a strange tingling sensation. During my stay, the vampires would take a total of 22 vials of blood. I had an MRI and an echocardiogram, an ultrasound to look at my heart.
If you have ever seen an ultrasound, then you know you cannot recognize anything on the screen; everything looks like a foreign object. The sonographer tried to tell me what we were looking at, but it was useless. Then I saw my heart. It had a perfect rhythm, and I could see the valves opening and closing. Amazing this little thing keeps us alive.
I didn’t have any answers to what was causing my symptoms when I left the hospital. I was still numb but was told it would go away. The doctors gave me blood thinners for a clot and told me to go to the neurologist to get checked out. The only doctors I had ever seen was my family practitioner, the dentist, and an OBGYN; what I considered “normal” doctors. Now I was going to see a specialist neurologist. The only thing he could tell me was that MS seemed unlikely because the keyword – multiple lesions – wasn’t present in my brain. Apparently, I had only one spot on the brain.
The numbness did go away after a month. Unfortunately, it would return soon after, and I ended up in the hospital again. This time it would be for five days, and I would give fourteen vials of blood. The vampires were draining me dry. I would have an echocardiogram and another MRI. They told me that the lesion in my brain was still there, but fortunately, it had not changed in size. Tumor diagnosis was looking unlikely. A more likely diagnosis was Lupus, although I didn’t have all the symptoms. I now added a rheumatologist to my list of doctors.
Eventually, I would end up in the hospital for the third time. The rheumatologist tells me it isn’t Lupus. The vampires took another 21 vials of blood during this six-day visit. I had a lumbar puncture this time where I had to lay in the fetal position for 45 minutes under an x-ray machine as they numbed my back. I was warned not to move since they were sticking needles in my spine, and any movement on my part may paralyze me.
A side effect from the lumbar puncture is a headache, the worst I ever had. Migraines were nothing compared to this. Migraines make me feel like my head was going to explode, and this pain made me want my head to explode. There was some relief, when I laid down the ache did ease up. Unfortunately, that meant I had to lay down for three days. Getting up and walking around the house was torture.
There was a day when I began crying, asking myself why. I didn’t believe I had the strength to keep going. I didn’t want to become a burden to my children. I was alone again. Then I realized my superpower, I was a survivor. Whatever this was wasn’t going to get me. I started reading books to become more aware of MS is.
Eventually, being diagnosed with MS would come. I was told that I have relapsing-remitting MS. This did not mean that I would end up in a wheelchair. There was only a small chance that would happen. If I had been diagnosed with progressive MS, it would have been different. My immune system mistakenly attacks the spinal cord damaging the cover of the nerves. This causes the nerve signals to be weak or slow. After an MS flare-up, my body seems to go into remission. Of the 2.3 million people with MS, 85 percent have relapsing-remitting. It can affect my vision, cognitive skills, fatigue, and sometimes my muscles spasm, especially in my legs.
I continued to have MS flare-ups but didn’t end up in the hospital. This time I would do outpatient treatment. For three days to five days, I would go to the hospital and get three hours of treatment, which is a high dose of corticosteroids. They would put an IV in my arm that would stay in for a few days and hook the medicine up as I sat there watching television or reading a book. I would sit there and watch others getting their different treatments. People would be getting blood transfusions or chemotherapy treatment. I went in so often that the nurses knew my name.
Other regular patients would all nod to each other as we walked in, it was our secret outpatient code. I would walk in, and the nurses would say, “Hey Ronna, back again? Do you want a Dr. Pepper?” I began to feel like this was a part of my life. I would watch people bring in their parents or grandparents and then leave them there for hours.
Some came in and sat there comforting their elderly parents as they got their treatments. My mother was the one bringing me in. My daughters would come after school, but they just wanted to watch TV since we didn’t have cable at home. It was nice being able to leave the hospital, but the IV in my arm became a nuisance. I always had to make sure I wasn’t going to hurt my arm. I had to have it securely wrapped before taking a shower so that water would not get into it. The medicine also left a metal-like taste in my mouth for two weeks.
After so many times of taking the steroids, my blood sugar would rise. I had never had high blood sugar before. My doctors began monitoring it carefully, and eventually, I would be diagnosed with type 2 diabetes. Unfortunately, I would still have to keep taking the treatments.
My MS medication did not seem to be helping slow down the MS flare-ups. Therefore my neurologist changed my prescription to a different MS medication, which was recently approved by the FDA. The medicine is not a cure. It does not help all the symptoms. It just helps cut down the MS flare-ups by tricking the nerves. Some MS medications cause flu-like symptoms, some make people sick for a few days. Some cause nausea and upset stomachs, and some injection sites just get swollen and inflamed. When deciding on an MS medicine, you must pick and choose the symptoms you can live with. Stomach cramps or hair loss. Diarrhea or abnormal liver tests. Fever or itching.
MS is a storm that will not go away. I never know when an MS flare-up will happen or how it will happen. I am determined to make sure there are more good days than bad days. My family has been my biggest supporter. They have been there through it all: hospital stays, checking on me during flares, mowing the yard, and so much more. Every year we do the MS walk together; our team is called Chufekne (wellness in Muscogee).
Multiple sclerosis may invade my life, but it does not control it. I will face this storm with a smile on my face.
Ronna Whitehead is currently a senior at the University of Central Oklahoma, double majoring in Creative Writing and English with a minor in American Indian Studies. She was diagnosed with MS in 2011, but this disease has to live with her and not the other way around.