Editor’s Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Kimberly Radomski’s Essay:
My story begins in the year 1978. I woke up and could not get out of bed as I cannot move my legs or left arm. “I am only 18 yrs old. I went to the hospital, was admitted for a week, but only to discharged by the hospital, with no diagnosis.
A week goes by and I’m getting worse, I have red raised nodules on the shins of my legs below my knees. They are warm to the touch and very painful. The doctor’s are baffled and again send me home with no diagnosis.
After 2 weeks of horrific pain, I’m finally carried in by my father and again admitted to hospital. The doctors tell my parents that they think there may be fluid in my ankles I will never walk again. But there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis or Erythema Nodosum. I spent 6 months in a wheelchair, was receiving steroid injections in my ankles and taking liquid painkillers just to be able to walk. Then, one day, it all just seemed to just vanish.
It’s now May in the year of 1995. I am giving birth to my second son by C-section. During this 3 day experience the only symptom that I had was severe tremors. The nurse said it was normal after a C-section. I didn’t agree, as it was uncontrollable.
Finally my husband and I left the Hospital and took our baby home. Two nights later I had to go back to the E.R. as I had a severe headache and my blood pressure was up. The doctors gave me a CT and a shot of Demerol, and sent me home.
The next day, I literally woke up feeling like I only had a head in the bed!! I could not feel my body parts and I had no control of their movements. Today, I have learned that what I had experienced has a name and that is “PROPRIOCEPTION”
At this point 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, I was blind and paralyzed and I could not respond to any of the doctor’s commands. I simply did not know how to respond. After being admitted and many tests, and procedures, and having had Nitroglycerin put under my tongue every few hours,
the only diagnosis that I received was that I had Post Partum Psychosis and that I needed to see a Psychiatrist. I remember a Neurologist checking my balance, and because I had a responding reflex, he said I was fine, yet I still could not see correctly.
My vision finally did come back as tunnel and “mirror like” vision. I was discharged with 1mg of prescription Ativan 3x as it calmed the tremors.
I did go to 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 and he was also very upset as I brought in my past MRI’s only for him to read as they all stated that I had MS on 4 different MRI’s. In June of 2001, I was told I had a secondary disease diagnosis called Multiple Sclerosis. I had to go to speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication that I was now addicted too. So with having Sarcoidosis and Erythema Nodosum and Optic Neuritis, and Lupus as well as Multiple Sclerosis along with other Autoimmune Related Diseases,
I feel that my participation through the Social Media would be of great knowledge to the health care community, health costs, as well as educating doctor’s and nurses that there are a number of unnecessary tests, procedures and wrong diagnosis because the Professionals are unwilling to listen to the patient.
One doctor wrote a letter to my Psychiatrist that he spent over an hour counseling me on my complaints.
I would hope that I could help the Social Media to learn as my being, a patient and an example, as well as a testimonial to all of the above experiences, that no patient should ever have to go through any of the above mentioned.
I now am a leader of a support group for “Scleroderma and other Autoimmune Related Diseases Forum” via; face book. I post the meetings each month on this site and research updates for people to read about. I am an advocate for AARDA.ORG and Lewy body dementia as well as a caregiver.
What I really hope to learn from the Social Media is that together we can teach doctors and patients to work together as a team.