TM Support Group of Alaska
Jennifer LeMay

I was 27 years old, had been married eight years, adored my three year old son who was the pride and joy of my life, and loved my fast-paced job working as an engineer in Anchorage, Alaska. On 17 September 2002, my life changed drastically when I woke up with severe pain in my lower back. The pain was unlike anything I’d ever experienced, and I went to a doctor that day. She thought I had a possible kidney infection, kidney stones, or some other kidney disorder. I felt reassured that there was a reason for the pain and that things would get better soon. However, life would be far from normal, as my condition deteriorated rather dramatically from September to December.

For the next six weeks, my pain focused in my lower back as a burning feeling. Laying down made it more bearable, but the pain was there 24/7, and I was not able to do anything but lay flat on my back 98% of the time. Pain pills didn’t seem to help. The pain worsened, my blood pressure increased, and my reflexes were very brusque. Tests determined my kidneys were fine. In early November, I began a terrifying, rapid downhill spiral. There were new symptoms appearing every day. My mom flew up from Montana to help us. The pain radiated downward from my back to the tips of my toes. My legs began having weird sensations that lasted hours at a time. I couldn’t stand very well, and my legs were threatening to give out on me. I had blurry vision, and it sometimes felt like a camera flashbulb was flashing repeatedly in front of my eyes. My bladder and bowel were giving me problems. I lost my appetite and didn’t feel very human anymore since I was living my life lying down and on pain medications that didn’t seem to work. I went through numerous tests and rounds of blood work, but nothing could pinpoint a cause.

The pain became worse, which I didn’t think was possible, and more of my body was going numb or having crawling sensations. My joints ached, and my muscles from head to toe were in constant pain. The only parts of my body that didn’t hurt were my nose, tongue, and teeth. I became hypersensitive to touch so that taking a shower or walking across the carpet felt like needles pricking my skin. Any touch of others hurt so badly; the texture of the buttons on the phone dug into my skin. My son was no longer able to sit on my lap, and my husband couldn’t hold my hand. I felt useless, fragile, and breakable and no one had a clue what was happening to me.

The feeling in my legs began to diminish, and both legs were feeling like dead weight. My balance was next to nothing, and I would lean into the walls when my mom or husband helped me walk. I was getting electrical jolts up and down the backs of both legs. Some of them were sharp enough to make my legs jump forward. I began to travel in a wheelchair and got a handicapped parking permit. My neurologist prescribed baclofen in November which stopped the muscle spasms and seemed to strengthen my legs slowly. A SSEP showed delayed response from my spinal cord to my legs. I tried physical therapy, but the therapy made my heart race and legs go completely numb.

On 2 December, I was able to wiggle my toes for the first time in weeks. I could now sit up for eight to ten minutes at a time and would get chest pains from the exertion. My hands, legs, and feet were numb all the time. I had lost 26 pounds by this point. My baclofen dose was increased, and I was able to start walking on my own again. The hypersensitivity left. This was the first encouragement I had had in 11 weeks. I was even able to stand up one night and brush my teeth next to my son for the first time since this started. Talk about exciting!

I had a spinal tap in mid-December, and the results showed a slightly elevated protein level. I continued to make some progress. For the first time out of my three visits with the neurologist, I was able to walk into the office (not in a wheelchair!), sit in the waiting room (for previous appointments, I’d have had to lie on the floor, because I was in too much pain to sit), and sit on the exam table rather than lay down. The test results were still not leading to a conclusive diagnosis, although the most likely possibility that explained all of my symptoms was transverve myelitis of the cervical spinal cord. On 19 December, I actually had a diagnosis of TM. Finally, this disease had a name!

From January through September of 2003, I felt like a mountain climber. I’d have periods of time where I would feel like I was making baby steps forward, and then I’d feel like I was sliding backward in giant leaps. I had extreme fatigue. My hands felt really crippled and stiff, and it was very painful to write with a pen. Typing was easier, but left my fingers burning. The burning in my lower back continued. My feet still went numb every now and then, and my ankles and knees throbbed. My reflexes continued to be very brusque, but I learned how to walk again in physical therapy, and the spastiscity in my legs stopped by September. My mom went home in mid-January, but it was too much for us to manage on our own so she came back after two weeks and stayed with us until March (five months total). I tried a wide variety of medicines, but with the exception of baclofen, nothing helped.

Eventually, the pain began to dissipate in my entire body and centralized itself into my lower back, hands, feet, wrists, and ankles. By September, I was feeling pretty decent (not normal); but compared to the last year, life was pretty good again. I went back to work a few hours a day and spent most of my time at home resting. My physical therapy visits ran out, so I joined a gym. In the beginning, I could only work out on the elliptical trainer for three minutes. I’d be so exhausted, I’d have to rest so I could drive home. With time, I was able to lengthen my workout time and level of intensity. However, I had a relapse in October. A lot of the symptoms from the previous year returned. My progress literally went back to where I had been three months before. It was so scary to have wobbly legs again, numbness in my hands and feet, burning in my thighs, increased intensity in my back pain that radiated downward, pain in ankles and wrists, and spots in my eyes. My activities came to almost a complete standstill. One night, my son (then four years old) went to bed and laid there sobbing. I went in to see what was wrong, and he said he didn’t like me hurting so much more. He prayed that night that G-d would make me feel as good as he did.

I had another spinal tap in November. The plan had been to wait until we received all the results in three weeks before we decided the next step. However, I was finally able to convince the neurologist that if I were a sinking ship, I’d rather have a life raft while the boat is sinking rather than a salvage attempt weeks after the boat sank. He prescribed three days of IV solu-medrol. The two most noticeable differences from the steroids were that my hands felt better within a few days (not crippling up again; numb, constant burning pains along the outlines, and sore wrists which made any hand movement difficult) and there was now no more burning along the sides of my legs. Everything else was pretty much the same (throbbing ankles, burning back, fatigue). By the middle of December, I estimated I was back to where I had been in the middle of September. I continued to be in about 75% less pain, and my ankles quit throbbing all together! The spinal tap showed increased protein again.

In 2004, February was a good month. March, April, and the first few weeks of May were difficult and painful. I tried a five day treatment of IV solu-medrol in early March, but this seemed to make things worse. Things were still better than a year ago, but it was hard to feel like I was going backwards again. I woke up one Sunday toward the end of May and felt noticeably better. This was as memorable a turning point as 2 December 2002 had been. There is no medical explanation, and my neurologist was so surprised at my next appointment. I’ve never seen him so smiley and he repeated several of the office tests we typically run through, because he couldn’t believe the progress. I believe G-d touched me in a mighty way and made the nerve cells remyelinate.

Fatigue is still something I deal with, but it is better than a year ago. If I overdo something, my back will burn (ibuprofen 800 helps). My hands stiffen up sometimes, but baclofen is helpful (I’ve even been able to decrease the dose 50%). I have gained a new perspective on life through this roller coaster ride and have become a better person through this experience. I rely on G-d for my strength, because I can do nothing on my own. I wanted to give up so many times permanently (especially during the first year), but G-d always had His hand on me, and I kept going when I thought I could no longer do so. I appreciate the small things, take time to smell the roses, answer my son’s never-ending questions, and feel blessed to wake up and be able to feel pretty good. I’m so thankful that I am able to be sturdy on my feet and can park away from the handicapped spots and feel strong enough to kick a soccer ball with my son. There is no guarantee of the future. I don’t know if I’ll have another relapse and will start sliding down the mountain again. I am scared sometimes at the unknown, but generally, I am able to keep my eyes focused ahead. I have really enjoyed the last four months and will continue to live day by day.

It was great to be able to go to the Rare Neuroimmunologic Diseases Symposium in Baltimore last month. My family and I have never met a more accepting group of people in our lives. People came to gather information and gain support from others who know what they are going through. I enjoyed being able to laugh about some of my oddball symptoms with others that have had the same things. Considering the trials we have faced and continue to face, we are an upbeat group of people, and the symposium was so positive and encouraging to attend. My husband and I volunteered at the symposium to start a support group in Alaska for people with TM. We want to encourage, listen, laugh, cry, and provide support for others in our shoes and those that are going through endless tests and specialists and still do not have a diagnosis.

Our motto is “pain is inevitable, misery is optional.”

Jennifer LeMay

Anchorage , Alaska

lemay3[AT SIGN]gci.net

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