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Social Media Summit Scholarship Essay – Mrs. Kimberly Radomski

Posted by @joycegroenke, Aug 8, 2011

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
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.


Disney Girl

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Joined: Aug 11, 2011
Posted by @disneygirl, Aug 11, 2011

I think Kimberely is right on the money, as to educate Our Dr’s. I’ve been thru a journey almost like her’s. Kimberely is my very best friend for over 30 years and she helped me with my Dr’s and since 2004 I was diagnosed with MS, Fibromyalgia and Chronic fatiuge syndrome. But what I didn’t know that had many other autoimmune disorders. I totally vote for her since she has helped me and others. I also help her with the Scleraderma foundation. We are trying to help others understand what they have with their symptoms and how we should talk to our Dr’s to understand us. I value my friend’s advice for it is always right. Please everyone vote for her. She is such a very caring person I’ve have ever known, and she will be there for anyone anytime or any day. We are both caregivers so we know.
So please vote!

Liked by Kimberly

Kari Ulrich, Volunteer Mentor

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Joined: Jul 15, 2011
Posted by @kariulrich, Aug 15, 2011

Thank you for bringing awareness to the American Autoimmune Related Diseases Association. I understand the frustration you must have gone through getting an accurate diagnosis. I can relate to many aspects of your essay.

Rita P.

Posts: 5
Joined: Aug 18, 2011
Posted by @ritap, Aug 18, 2011

Ms. Radomski’s essay deserves a very strong vote for participation in the upcoming social media event. Autoimmune disorders, and MS in particular, have deeply affected the lives of many patients, and there is a great need for support from the community of patients and caregivers. There are also social and psychological factors, as Ms. Radomski mentions, that need more analysis, clinical focus, and treatment options…and also alternative treatments. Social media is ideal for helping us to “take the next step” in addressing MS and other autoimmune diseases many of which are complex and uncommon. I greatly appreciated Ms. Radomski’s views as a patient and believe that patient advocacy is of the utmost importance as a theme in the upcoming social media event.


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Joined: Aug 02, 2011
Posted by @sebley12, Aug 26, 2011

Thank you so much Rita for your kind words. Thank you for reading my story as I never want anyone to have to endure this kind of Illness and wait 35 yrs to get a proper diagnosis. I appreciate your vote as well as comment and I wish we could all win this scholarship as I feel everyone has an important message for the social media. Thanks again and hope you are well. xoxoxo

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