Central Texas Support Group
Hi everyone! My name is Gina Rodriguez, and I have volunteered to lead the Central Texas Support Group. I lived in the Dallas/Fort Worth area for about 10 years, and helped Barbara Nichols with the support group there. My husband joined the Army and has been stationed at Fort Hood, near Austin, Texas. Once we found this out, I spoke with Barbara, and we decided to start a group for Central Texas. Although it’s taken far too long to get off the ground, I’m excited to finally get this going!
My story is a familiar story, so I’ll keep it short. In 2008, at the age of 28, I woke up one day unable to urinate. Two days later, I finally went to the ER and had a Foley catheter put in. I saw quite a few urologists, none of whom could figure out what was going on with me. I had the catheter in for a month before I learned to self-catheterize, during which time my legs also grew weaker. It was finally determined that the cause was neurological.
The first neurologist waved me off and told me I would be fine. I saw a few more specialists and was finally put on steroids. The steroids seemed to help. The second neurologist that I saw ran more tests, and couldn’t figure out what was going on with me. He finally did a spinal tap, at which time I was diagnosed with transverse myelitis. My options were to wait and see what happened next, or he would refer me to the Clinical Center for Multiple Sclerosis at UT Southwestern. I opted to be referred to UT Southwestern (UTSW).
The neurologist at UTSW was my 10th specialist. It took two years and multiple tests and specialists to get to the right place. My diagnosis was between Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO). For years, my neurologists at UTSW leaned toward NMO, although I did not yet meet the diagnostic criteria. I was officially diagnosed with NMO about two and a half years ago, although I have been treated with the NMO medications since 2010.
I have had approximately 8 flares since 2008. I have recovered from being blind, paralyzed from the waist down, and many other manifestations of this disorder. I am fortunate to have found the right doctors, and to have recovered well from flares. In 2014, my husband and I welcomed our son, Daniel, into the family. I hope to connect people with rare neuroimmune diseases, and provide a safe place to learn and support one another.
If you live in this area and would like to join our group, please contact me at [email protected]
