In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

ADEM: Betsy Baltera
Absecon, New Jersey

I am 45 years old and retired from a career in law enforcement three years ago. My journey started May 2, 2004. During the early part of the year I had two falls, one in the shower and one down a few basement steps. Both left me badly bruised and confused. I have never been clumsy and could not recall the last time I had fallen. It was a very stressful time in my life. We had just sold our family home and moved Mom and Dad into their new home. Of course, we had cleaned and painted every room! We ran into a few hurdles while selling the house which increased my stress level. I thought the stress and hard work were causing my fatigue and dizziness.

I have previously been diagnosed with Neurologic Lyme Disease, Epstein Barr Syndrome, Chronic Fatigue, Fibromyalsia and finally Chronic Lyme Disease. So, my immune system is not what it is supposed to be. I had taken early retirement from my career as the stress was not conducive to “healthy” living. I was plagued with symptoms too numerous to mention.

As I said, my journey started on Sunday, May 2, 2002.  I had another fall but this time I broke the head and neck of my left humerous (shoulder). The ER doctor told me that it was considered the most painful of shoulder fractures and prescribed pain medication. Monday morning I went to an orthopedic doctor who confirmed the break.  He told me that if I could keep my arm immobilized for a week and the x-rays showed proper mending, I would not need surgery. He also told me that it would be “very painful” and prescribed something stronger than the ER doctor had.

I went home and started taking the pain medication. The doctors were right about the pain. I could not sleep and was then prescribed sleeping pills. I was determined not to have surgery, so I stayed in bed. The medications made me drowsy, so I mostly slept.

Three days later my lips were numb, and then my nose and tip of my tongue started getting numb. I had an oval area in the center of my face that was completely numb. I thought it was a side affect of the medications and stopped everything except ibuprofen. My eye sight was slightly off; if I lay on my side I could see clearly.
 
On Friday my sister took me to lunch and while sitting at the table I had a strange sensation come over me. It is difficult to describe; it was like I was drugged. She took me home and I went straight to bed and slept for hours. Thinking I was still on the pain medication, she stayed with me until my husband, Steve, came home.

By Sunday my speech started slurring, I was dizzy and my balance was beginning to be affected.  Steve convinced me to go to the Urgent Care facility near our home. I was diagnosed as having vertigo and prescribed Meclizine. The doctor told me that the numbing sensation in my face could be from “post concussion” syndrome. Although I did not hit my head, he suggested the jolt from my impact could have affected my brain. He also told me to return in one week if I did not feel better.

I also started having more problems with my balance and my vision was now doubled. I stayed in bed and slept most of the day or watched television with one eye closed.

Wednesday, back to the orthopedic doctor; the visit was a challenge. It was becoming progressively hard for me to walk on my own. When I sat in the waiting room, I just didn’t feel right; like I was in a fog, detached from my surroundings. The x-ray was fine.  I didn’t require surgery.  The doctor told me that my balance could be thrown off by my arm being strapped to my body. I told him I was experiencing numbness and tingling and he told me to see my primary care physician.

I was now numb and had tingling over most of my body, my speech was slurring, my balance continued to be a problem. Steve had to help me walk. I started having difficulty controlling my leg muscles and started “plopping” down instead of sitting. I was also becoming extremely giddy, laughing at everything. If I laughed too hard I wet myself as I could not get to the bathroom in time.

I guess as my brain was being attacked, my thought process numbed as well as my body. I never lost consciousness, but I was not thinking rationally. Every time Steve said my symptoms were getting worse, I denied it. I thought I felt better and everything would clear. Under normal circumstances, I would have been calling every doctor that had ever treated me!

Thursday, Steve convinced me to go to Urgent Care although he wanted me to go to the emergency room. My primary care physician was on vacation. I felt as though I was moving in slow motion, keeping one eye shut for single vision and the fog was thickening.  When we arrived, I knew the receptionist. We had been coworkers, but I was unable to speak to her. I was having difficulty forming a complete thought. I remember thinking “she probably thinks I’m being rude.” When I was seen by the doctor, he immediately said I needed a CT scan and a neurologist!

I was reluctant to go to the hospital.  I didn’t want my husband waiting in the ER. My father had been in poor health and I’d spent hours in that room! After driving past the hospital, I remember thinking, maybe I didn’t know what was best, and I should listen to Steve.  After the exam and a CT scan the ER doctor explained that I had some delay in my eye movement. He thought the CT scan looked okay, but suggested that  I see a neurologist as “something” was going on. 

On Friday morning another ER doctor called me at home.  He said the final CT scan showed “something unusual,” but not to be alarmed. He suggested that it could just be movement during the procedure, but I should have an MRI and neurological follow-up exam.  Steve called my primary care doctor, explained what had occurred and requested a prescription for the MRI.  The next available appointment for an MRI was Monday, and the neurologist could see me on Tuesday.

As the weekend progressed, so did my symptoms. I could no longer walk unassisted. Steve had to walk backwards with his arms around my waist. I held onto him with my one good arm and shuffled my feet. I could not lift my feet without losing my balance and feeling like I was going to fall. I was fearful of another fall and breaking something else. I could no longer control my bladder and was wearing Depends. I could control my bowels just long enough to make it to the bathroom. My speech was more slurred and now I sounded like I had suffered a stroke. I had also lost the ability to feed myself. My hand had developed a spastic movement. I was feeling shaky inside and had a strange sensation in my mouth. I was starting to get upset. I was making this strange half laugh, half cry noise when I wasn’t giggling at everything. I had started wetting the bed at night.

During the weekend my mother came to visit and when my husband and I “walked” into the kitchen, she immediately started crying. We sat at the table and she had to feed me. I now knew something was very wrong.

Monday 4 PM, at the radiologist, a nurse asked me to sign some forms and I found that I could not write. I could not control the pen in my hand. I signed my name with a wiggly X. I later found a note pad next to my bed that was “scribbled” on. When I was taking the pain medication, I was jotting down the time so I knew when to take the next dose.  I could hardly make out the handwriting. My guess is that my handwriting had started to fail with the numbness in my face, but since I had no other reason to write, it went undetected.

During the MRI the technician kept telling me to stop moving. I had no control over my movements. The technician came in and said that she had to inject me with a dye, because I was moving. I still recall being worried, but not thinking clear enough to understand how much I was deteriorating.

Tuesday, I insisted on a shower before my neurologist appointment.  Steve helped me into the tub/shower.  I held myself up by holding the towel bar with my good arm/hand and he washed me.  When we arrived at the doctor’s office, Steve put me in a wheelchair. I recall the nurse asking curtly why I was in the wheelchair. I tried to explain that I could not walk, but my slurring made it difficult to understand me. Steve was now my interpreter.

While waiting for the doctor to come into the room, I laid down on the exam table as I was having difficulty sitting without falling over. When the doctor arrived, he had a perplexed look on his face. He told us I had I had some “inflammation” in my brain and wanted to start me on IV steroids. He explained that I had some type of demyelinating disorder and the steroids would stop the inflammation process. He told us that I did not have a brain tumor and it did not appear as if I had a stroke.  He believed I could do home infusions and wanted me to return to his office in two days for a lumbar puncture.  We went home and Steve started making phone calls. Between the insurance company and the home infusion company it would be the following Monday before the IV would start.

Wednesday morning Steve called the neurologist and told him about the delay in starting the IV and that I was getting worse. I could no longer sit upright by myself and had fallen off the toilet. Of course, because of the giddiness, all I could do was laugh! Steve wanted me admitted to the hospital immediately. We were told to go to the admission office and a bed would be arranged. Trying to get to the car was an adventure. Steve and his mother held me up while I shuffled my feet. There are three steps from our back door to the drive way and I felt like I had to climb down a mountain! I was crying that I didn’t want to fall. It was very frightening, but again, I was doing the half laugh, half cry sound.

Steve was now the only person who could understand what I was saying. He interpreted for me at the admission office and when the floor nurse questioned me. It was now late afternoon and we had to wait for a bed on the neurology floor. I was started on IV fluids only. The lumbar puncture and steroids were scheduled for Thursday .

Thursday morning my doctor came and did the lumbar puncture in my room. While he did the procedure, he told of the “third rule;” 1/3 of patients fully recover, 1/3 stay the same, and 1/3 see only slight recovery.  He also told me he was testing me for several things, including West Nile Disease. He did not believe this was an initial attack of MS and was perplexed.  I told him I did not care what caused this attack, to just make me well. We could do the investigation LATER!  He assured me that with the steroids and time, my body would start to rejuvenate. I was started on Solumedrol later that morning.

Friday I had a cervical MRI. The neurologist again told me he didn’t believe I had MS. He said my MRI and LP were not consistent with MS.  He explained that with MS, brain lesions are scattered and my MRI looked like someone took an eraser and erased an entire portion of my brain. I had lesions in the deep white matter of my brain and the Pons area. He later told me that he had never seen an MRI like mine with an alert patient. In his opinion I should have been in a coma.  Although he did not believe I had MS, his course of treatment would be the same. I received five days of Solumedrol IV and another week of an oral tapering dose.
I don’t remember when, but somewhere along the way, I developed more noticeable numbness and tingling.  I was now feeling like I was wearing bike shorts and tight ankle socks, and my feet and toes were very cold. I still had double vision, but with one eye closed, it was okay. So, I kept one eye closed. A nurse finally got me an eye patch to wear. I was developing swallowing problems; the speech therapist taught me how to use a straw to swallow without choking.  I never had a headache nor lost consciousness, just a depressed level.

The steroids upset my body temperature and I started having hot flashes and sweating profusely. My mother brought me a hand held fan, which helped.  Lying on a plastic bed cover with a plastic pillow did not help. The nurses would come to change my gown and bedding, because I would be saturated.

A commode was placed next to my bed. I timed myself every two hours and got myself to the commode. The nurses had taught me how to stimulate my bladder so I could go. I was only cathed once during my hospital stay. A urologist saw me and suggested follow up after rehabilitation.

The doctor started seeing some improvement; my symptoms were not progressing. I was able to walk short distances aided by my IV pole. When my five days of Solumedrol were complete, I was transferred to a rehab hospital by ambulance. On the sixty minute ride, an EMT rode in the back with me. I asked her about my chart and she read some of it to me. My diagnosis was listed as MS. I told her of my conversations with my doctor. She told me about her hurdle the previous year with a disability and how she overcame her obstacles. She encouraged me to read everything I could about MS when I was released from the hospital.

I only spent a few days in the rehab hospital. My insurance would only approve of a facility 45 miles from home. A combination of the brain injury, steroids and a lack of sleep sent me into a major depression. All I did was cry. I cried in therapy, because my body would not do what I wanted it to. I cried because I still could not control my bladder and had “accidents.” I cried when I went to the dining hall, because my vision was still double and I couldn’t see the other patients.

I had my cell phone with me and I called my husband all day begging him to take me home. I begged my PT and OT to let me go home. I promised I would do anything they wanted. I was finally able to walk without stumbling, and “passed” their evaluations. I was approved to go home. I later regretted leaving but, of course, hindsight….

When I returned home, I slept for two days! My double vision cleared, but was not quite normal. I started out- patient therapy three times a week for an hour a session.  I spoke with my neurologist and was given the diagnosis of ADEM. I started surfing the net. I could only peck with one finger but I found the TMA website! I sent for the information package and read everything when it arrived. I no longer felt alone. I learned more from that package then I would from my doctor.  There were limited articles on-line and in publications about ADEM. I had many symptoms associated with TM and could relate with them; my brain was just a bit more affected. 

I was eventually able to chat on the forum and found a new family.  I finally understood that my body needed rest, not pushing. I took my naps everyday; not that I could avoid them. I started to pace myself. My speech had cleared, but when I was fatigued, I had a slight slur. My family and friends knew it was time for me to stop and sleep.

I was experiencing new tingling sensations everyday. I had my neurologist on speed dial. I think the nurse was tired of talking to me. She assured me the feelings were my nerves rejuvenating and that they were good feelings. After six weeks, I was able to start therapy for my shoulder which greatly increased my balance.  I finally felt comfortable enough to drive about three months after my attack.  Of course, by then I was able to use my left arm! My bladder and bowel function slowly recovered and the tingling and numbness ceased. The last part of my body to feel normal was the tips of my toes.

My two month MRI showed “marked improvement, particularly with regard to the pontine abnormality.” My neurologist was ecstatic. I was his first ADEM patient and he was pleased with my “rapid” recovery. When I was finally able to drive myself to his office for a visit, his nurse told me she didn’t think I was going to recover.  She kept insisting I had MS even as the doctor was telling me I had ADEM.  He did tell me that if I had any recurrences, my diagnosis would be changed to MS. I initially fretted about this, but finally “let it go” and would concentrate on how far I had come. I remember my PT session when I was able to balance myself on one foot; it was overwhelming.

My recovery was slow; a little bit each day, week, and month. I stayed close to home for months, afraid to be out of bathroom range. I still suffer urge incontinence and I can’t recall how long it took for me to be comfortable with my bowel “issues.” When I felt the urge, I had just enough time. I can’t put my recovery on a time line; when I look back at how far I’ve come, it seems like someone else lived through this ordeal.

One year later and here I am; working 15 hours a week, still taking naps and impressing the doctors. I still battle dizziness, some bladder control, memory problems, and other issues. I also have cognitive problems. I can’t form a complete sentence, or “find” the right word.  Most of my “symptoms” appear when I’m fatigued or during PMS.

My husband and I have a similar “strange” sense of humor and feel that has helped us cope. We can and did find humor everywhere we could. We went from my extreme giddiness to extreme depression, and still kept each other laughing. I tell him it was “scary” living inside me and he reminds me how frightening it was for him and my family. If not for his persistence, I might not be here today.

I understand that doctors can’t order an MRI for every “dizzy” patient, and that they have to rule out other possibilities. It still doesn’t make the experience any easier to understand. When I asked my neurologist about my previous falls, his reply was, which came first, the chicken or the egg? I remind myself that it is called a “practice” because they learn as we do. I’m still learning how to live with my few residual problems.

I read early on that each of us is like a snowflake; no two alike, but we can be here for support. The TMA has helped me to continue to be positive. I only hope I can help others in their journey to recovery.

I can be reached at aberches[AT SIGN]aol.com.  Please use ADEM in the subject line so the “spam” monster doesn’t keep you away.

Still recovering,
Betsy