In Their Own Words

Recurrent TM and Devic’s Disease
Bonnie Brickhouse
Topeka KS

Hi. My name is Bonnie Brickhouse. I have had TM for six years. I had a slow onset of the disease. I was having lower back pain, and I went to see my doctor. He wanted a urine sample, because he thought it might be a kidney infection. I could not get the urine sample he wanted, so he laughed at me and said, “how can I culture your urine, if you don’t give me any to culture.” I then felt like I needed a new doctor, so I found a new one! In hindsight, I see that he was unable to diagnose my condition. I got a new doctor that was in a group of doctors with a neurologist. I didn’t know I’d need one, but I was glad to find out that the neurologist was well versed on TM. She was great.

For a few years, I had been going to college and also working, so I was proud to graduate! I received my BS in Human Services in 1997 and was diagnosed with TM six months later. I used my degree working at the local Public Broadcasting Station in Topeka. I was working when I noticed low back pain would start in the middle of the day and get worse until I went home. With rest at home and a night’s sleep, I was okay in the morning. Then the next day, it would start all over. I had that for a little more than a week.

In my job as volunteer coordinator, I got the newsletter ready in the studio for the volunteers to address and code for a mailing. This morning, it was extremely hectic, because I was in charge of getting the food ready for the volunteers. I noticed my right foot wouldn’t move when I walked out of the big doors leading to the studio and I fell. Then, my leg started working again, so I didn’t think about it anymore. Later, I got a call that my mother was sick and had been air evacuated to a hospital in Wichita. My husband picked me up so we could see Mom in the hospital. That night, we stayed in a motel, and the next day I could hardly walk. I hung onto rails along the halls and my husband for support. We told Mom we had to go and would see her soon. My husband said we better get you home and to a doctor. It was Friday. We went to the emergency room, and the doctor there saw I could hardly walk. He said, “It must be your sinuses.” He actually sent me home with sinus medicine!

Besides the lower back pain and not being able to walk, I had bands of muscles which tightened painfully across my chest and waist. Then, they would loosen and tighten again. I had nerve feelings, like burning, prickling, and itching. I had an appointment with my medical doctor on Monday, so we waited over the weekend. I walked at home by hanging on to the furniture. When I went to my appointment, the doctor took one look at me and made arrangements for me to be admitted to the hospital. The neurologist ordered an MRI, and it told the tale right off the bat. My spine had inflammation in it. She ran all the tests and diagnosed me with TM. She put me in critical care, so they could check on me while I got IV steroids. The neurologist didn’t want the TM to affect my blood pressure or breathing. It was close! She took an MRI of my head, and said it showed I did not have MS.

I got better fairly fast and went to the rehabilitation floor. I started to walk with a walker and was able to go home. I had a lot of weird prickling and itching feelings in my arms. I took Baclofen for spasms in my legs. I learned later the herb Wood Betony can be taken for spasms if you need extra spasm control. Also the herb Scullcap is good for TM and MS symptoms.

Three months later, I relapsed. We think it was brought on by a tetanus shot my regular doctor seemed to think I needed. When I got home from the hospital this time, it wasn’t as easy to come back. I had a lot of fatigue. It was harder to use the walker, etc. I didn’t get a chance to recover from the first relapse before it happened again. I got gastritis which made my system even weaker, and I relapsed again while getting a colonoscopy. There was an infection in my colon, and it was bleeding. I landed in the hospital again. This was the third bout with TM, and it completely took my legs. The neurologist tried plasma pheresis, and it brought me down so far I almost died. I remember there was an angel in my intensive care room that was taller than the ceiling!

They put me in an ambulance, and I was sent to KU Medical Center in Kansas City, KS. I was put under the care of a specialist who was the professor of my neurologist in Topeka. After I got another round of steroids, she put me on Betaseron. It worked really well! I was really on the mend. My daughter and I worked hard for six months, so I could have a physical therapist come to my house two times a week. My daughter and grand daughter came every day, and a friend was with me to give my daughter time off.

Then comes Devics disease. I had low vision in one eye and pain, so I went to my eye doctor. He said optic neuritis was what he suspected. He sent me to an ophthalmologist, and it was optic neuritis. After lots of tests, he gave me some steroid eye drops which cleared it right up, but the inflammation had killed part of my optic nerve. There were places on my optic nerve that were gray where they should have been pink. Then, another problem came later. The steroid drops produced a steroid cataract. I had the cataract removed. That eye doesn’t see as bright colors as it should, because it has those dead spots on the optic nerve. I only had one optic neuritis attack.

On my next appointment, my husband and I told the neurologist about my eye, and she said, “I was wondering if your eyes would be affected, you have Devics syndrome.” I had no idea the inflammation of my optic nerve was related to TM. If I had known that, I would have seen her about it. I probably would have been warned not to use the steroid eye drops so long.

After two years of hard work, I was walking and going up stairs to the patio with my walker! I was looking forward to the summer! My bladder function came back, and I was going to be rid of the catheter! I had taken Betaseron for almost two years, and it was working so well. It quit working, and I had another relapse right before the summer. Everything was lost. I was numb, weak, and paralyzed again; even my hands. I got better and went home still on the Betaseron. My husband asked the doctor if we should change medicine. She said, no, it will be okay. I relapsed.

Then, she put me on a leukemia-type chemotherapy for almost two years, and I haven’t had a relapse since. I am now taking a Copaxone shot once a day and there have been no relapses. It is so nice not to relapse! I am in a wheelchair, and I am on a ventilator at night and oxygen during the day. I have bowel and bladder dysfunction and spasms in my legs and lower torso.

I wish this last demyelination hadn’t happened, so I could move my legs. But, I can do so much with my upper torso. It is great to have that much. I am a painter. I love to oil paint and show my paintings. I belong to the Art Guild. I love the computer and e-mail all my friends and family. I talk to my daughter by e-mail every day. I also have friends who are with me every day while my husband goes to work. My e-mail address is bonniebrickhouse[AT SIGN]worldnet.att.net Please send me your e-mail address. If you have any questions, I would love to hear from you.