My name is Kimberly and my story begins in 1978. I woke up one morning, unable to move my legs or left arm and unable to get out of bed. At the time, I was only 18 years old. I went to the hospital, was admitted for a week, and aside from my psoriasis, was discharged without a diagnosis.
As weeks went by, I continued to worsen. I developed red raised nodules on the shins of my legs. They were warm to the touch and very painful. The doctors were baffled and again sent me home without a diagnosis.
After a few weeks of horrific pain, my father carried me into a different hospital, where I was admitted with concern from the doctors there may have been fluid build-up in my ankles and I would never walk again. Fortunately, there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis and Erthema nodosum. They thought it could have also been polio or rheumatic fever, and so I spent six months in a wheelchair. I was given a final diagnoses of psoriasis, sarcoidosis, Erthema nodosum, and lupus. Along with receiving steroid injections in my ankles, I took liquid painkillers just to be able to walk and function.
In May 1995, I gave birth to my second son by C-section. During this three day experience, I started having severe tremors and headache. The nurse said it was normal after a C-section. I didn’t agree, as they were involuntary and uncontrollable.
Finally, my husband and I left the hospital and took our baby home. Two nights later, I went back to the E.R. with severe headaches and raised blood pressure. The doctors gave me a CT scan, a shot of Demerol, and sent me home. They said I was fine. I knew I was not.
The next day, I literally woke up feeling like I only had my head in the bed! I could not feel my body parts from my neck down to my toes, with no control of any movements. I was numb and unable to walk. Later, I came to learn the name of this experience as “proprioception,” something we all need to learn about.
When my speech started to slur, my husband drove me back to the hospital. By the time I entered the emergency room, I had no vision, and within hours, I became paralyzed. I was unable to respond to any of the doctor’s commands; I could hear every word, but simply did not know how to respond.
After being admitted for weeks and undergoing many, many tests and countless procedures, along with the occasional Nitroglycerin put under my tongue every few hours, the only diagnosis that I received was that I had postpartum psychosis and needed to see a psychiatrist. I remember a neurologist checking my balance, and because I had a slight responding reflex, he said I was fine. Mind you, I still could not see or walk correctly, nor could I drive a car as I didn’t know how.
After quite some time, my vision finally returned as tunnel and “mirror like” vision. I was discharged with 1mg of prescription Ativan 3x a day, as it calmed the tremors. I did see a psychiatrist and had a neuropsychological evaluation. It was my psychiatrist who said I had every symptom of Multiple sclerosis and suggested that I see an MS specialist. So I made an appointment to see an MS specialist who finally diagnosed me with Multiple sclerosis. He deemed me to have a host of other autoimmune related diseases as well, and was very upset that no other physician recognized the MS on all four past MRIs I had brought him to read.
In June of 2001, it was confirmed, I had a secondary disease diagnosis called Multiple Sclerosis. I had to undergo speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication that I was now addicted too for the tremors as it was shutting down my digestive system. All of this was a result of being misdiagnosed. I have had unnecessary surgeries, physician appointments, and countless diagnoses from so-called professionals telling me it was all in my head. One doctor wrote a letter to my psychiatrist that he spent over an hour counseling me on my symptoms and complaints.
I am hoping that telling my story here would be of great knowledge to bringing awareness to overlapping autoimmune-related diseases such as MS. My hope is that my experience can help all of the newly diagnosed MS patients with overlapping diseases as well as their family & friends. My being a patient for example, as well as a testimonial to all of the above experiences, it is my wish to let others know that the complaints and symptoms are real, not all in our heads and that no patient should ever have to go through any of the trials I mentioned.