Obstetric Issues and the Neuroimmunologic Disorders: Information and Support Network
Donna Chattin

From Darkness to Light

This particular journey in my life began in October of 2005. I’m sure that many of you can relate to being fine one day and not so fine the next.  I awoke early on a Saturday.  My legs didn’t feel right; like they were asleep and a little sluggish. I wasn’t in any pain and hoped the strange feeling would pass.  As you may guess, the feeling didn’t go away, the numbness increased and it started to hurt if I touched my body from the waist down.  Fearing something strange was definitely going on, I went to the ER on Monday morning, instead of going to work as a registered nurse.

I have come to understand that my experience was similar to others. The ER doctor could not understand what was going on. Blood tests didn’t reveal any clues. They decided to “take my symptoms seriously” because I was a nurse in the very same hospital.  A MRI was done which revealed an inflammatory lesion in my thoracic spine. “Well, we are sorry to say you have MS,” they told me. I was admitted for a full course of IV steroids, additional MRIs and a possible lumbar puncture.

After hearing this news, this diagnosis, I tried my best to come to terms with it.  What would this mean for me and for my family?  The next day I had a brain MRI. The neurologist seemed in total disbelief to find I had no evidence of any lesions in my brain.  He said, “Well, you probably don’t have MS; let’s hope this is a one-time episode.”  He never called it Transverse Myelitis.  I was struggling to understand what was happening. 

I was never told and really never knew that steroids could make you feel like you were losing your mind.  Simultaneously, I became very depressed.  I could not work.  I was experiencing a multitude of symptoms and didn’t really know what was happening to me.  I sought help from my internist.  He was the first doctor to use the term Transverse Myelitis.  After doing some investigating, I realized that my condition and symptoms definitely seemed to fit the diagnosis of TM. During all of this, I tried to return to work - what a disaster.  Between the overt neurological symptoms, pain and depression, I was barely able to make it through that one horrible day.  Would I ever be a nurse in Labor and Delivery again?  I didn’t think so at that point.

I guess it is true, sometimes you have to hit rock bottom in order to start going back up again. Well, I felt I was at the bottom.  It was about then that a friend, who happens to be a Nurse Practitioner at Johns Hopkins, told me about the Transverse Myelitis Center there.  To be evaluated there, you must make a request.  After I managed to do so, I was assigned to a physician there.  Being evaluated by the physician at the Transverse Myelitis Center was such a profoundly informative and uplifting experience.  Finally, someone knew about what was really going on with me.  He knew everything about Transverse Myelitis; the damage to the spinal cord, the symptoms, the healing process, the chances of this being the first attack of another neurologic disease, and the depression.  He had a plan for follow up, so as not to miss any further disease processes.  He supported the treatment of my depression. Most importantly, he was willing to listen and be available for any questions or concerns.  By giving me information and support, he helped me start to get a sense of control back in my life.

After several months of physical therapy, I returned to my job as a Labor and Delivery Nurse.  At first I worked part-time, and then after six-months, I had recovered enough to work full-time.  I cannot express how blessed and grateful I feel to have recovered as well as I have.  I am not completely perfect, but I am doing very well. There will always be a little sense of uncertainty as to what the future may hold, but this, of course, is the case for everyone in life; there are no guarantees.  We must make the most of what is ours today.

It was in this vein that an idea was born.  I asked my physician at the Transverse Myelitis Center what I could do to get involved to help others with TM.  I was interested in helping not just from the perspective of a patient, but also with the experience of a nurse.  He came up with an idea that would utilize my experience as a Labor and Delivery Nurse and incorporate my own experience with TM.  He told me that a real void exists regarding information and support for women (TM patients) concerning issues with pregnancy and childbirth.  We have decided our goal is to develop a written source of information that would address issues faced by women with rare neuroimmunologic disorders during pregnancy and childbirth.  It is also our hope to offer support and information through the TMA website and, in the future, to be able to expand our efforts to include support for many other women’s health issues. 

In addition, I have enlisted the support of a high-risk OB (perinatologist), with whom I work, to contribute to this effort.  In order to gain a better understanding of specific issues, I am asking for TM patients who have experienced pregnancy and childbirth to consider sharing their personal experiences regarding chronic urinary tract infections, mobility problems, preterm labor, medication use during pregnancy, labor experiences/complications, pain management with epidural/spinal anesthesia, delivery experiences/complications and postpartum experiences.  
Jim has set up the Women’s Heath Issues and Pregnancy Forum on the TMA web site from the following link:
http://www.myelitis.org/phpBB2/viewforum.php?f=28

I welcome any comments, feedback, sharing of personal OB experiences, and questions.  My email address is donna_chattin@comcast.net.