My Story Prompted Me to Start a Support Group
I volunteered to be a support group leader for The Siegel Rare Neuroimmune Association because of the need for awareness and support for our members and caregivers living with this condition. I agreed to help as a support group leader because of my experiences and my story, which I am sharing with you.
On March 14, 2012, I visited my primary care physician with numbness in my feet and legs. My primary care physician ordered an X-Ray and did not think it was anything serious to worry about. However, on March 15,, I was completely numb from my waist down. I could not feel anything below my waist. I was scheduled for surgery on March 19 for other reasons. I had been having many medical problems including internal bleeding, blood in my urine, hair loss, weight loss, and GYN problems. All of the doctors treated my problems separately.
On March 15, my OB-GYN physician instructed me to go directly to the Emergency Room (ER) as he felt that it was something very serious and needed immediate attention. Upon my arrival at the ER, the on-call neurosurgeon was called in to review my case and they thought that I might need to have emergency surgery.
I was very blessed that the neurosurgeon assigned to my case was very experienced with Transverse Myelitis. He diagnosed me with Transverse Myelitis (TM) that night and admitted me to the hospital for further testing. I did not have to have any type of surgery.
The doctors could not determine what else was causing my problems. Therefore, one doctor said Lupus and one doctor said Sjogren’s syndrome. Finally, it was determined that I had TM and Lupus. I was treated with intravenous steroids, cellcept and hydroxychloroquine and a long list of other drugs.
I was also informed that my other previous medical problems were due to the TM and Lupus. Therefore, my surgery that was scheduled for March 19 was cancelled. On May 22, my neurologist informed me that my final diagnosis would be TM, NMO, Lupus and Sjogren’s.
I was so confused and did not understand all of this information. My doctor tried to explain the conditions and took time to speak with me during my appointments, but it was not enough time to comprehend this new medical condition. I tried to find local support groups, a medical center that provided support as well as other individuals who understood and had experienced such a rare disease and who could answer my questions. There was no one locally. I was able to connect with SRNA and find many of the answers through the website and other electronic information. But there was not a physical local support group. I had to answer my own questions through my research. I spent many hours each day researching my medical condition and trying to find more answers.
My medical situation changed my life style completely and my family provided all of the rehabilitation for me. I had to learn how to walk again as the doctors told me that I may never walk again or may only gain some mobility with restrictions. I can now walk again, but I have my limitations.
The medication is hard on my system and I had to adjust to the severe pain and also had to limit my activities because of the rest I needed to get through the day. Many people look at me as if nothing is wrong with me because I look so healthy; but what people do not understand is that I fight every morning to get started and fight every night to get to sleep because of the burning, banding and pain.
Therefore, I want to be a support for others so that they will have a local resource to call, meet and ask questions and also get help with understanding it all. This is a very complex medical condition and it is very important that we provide the support to help others get the support and awareness that they need.
It is also important to me that people do not have to experience the long time pain and medical problems before they are diagnosed. It is important to know that we can fight this medical condition together; but alone it can be hard and bring on other life-changing issues.
If you are in the Richmond, VA area, please contact me and I look forward to us getting together and forming a support group for these rare neuroimmune diseases.
Together we all can form the vision and provide long-term support and awareness.
~ MaLinda Washington, Richmond, VA
