In Their Own Words

Recurrent Transverse Myelitis
Yolande Major
Lachine , Quebec Canada

When I was first diagnosed with Transverse Myelitis and told there was a 15% chance of reoccurrence, it never occurred to me that it would be my case. But 5½ years have passed since I was offered these odds, and I have since had ten attacks. I can no longer deny that I have Recurrent Transverse Myelitis.

It first started at the end of September 1998. I had had a major backache for about a month. There was no relief from anti-inflammatories, and other symptoms began to appear. First, there was the loss of control of my left knee, and then difficulty voiding and constipation and, finally, numbness began to spread through my left leg to below my breasts.

When I called my family doctor, he told me to go to the emergency. He agreed with my choice of the Royal Victoria Hospital, as the Montreal Neurological Institute (MNI) is right across the street from it. He had assumed it was a neurological problem.

After some time at the emergency, I was transferred to the MNI in the evening. The next morning I had a MRI. The radiologist could see ‘a shadow’ at the T8-T9 level, but it wasn’t clear what it was. In any case, I was treated with IV Solumedrol for five days. The backache went away and I gradually started walking better. I was kept in the hospital for more tests and consultation with other doctors. Some thought it could be a lymphoma or a sarcoid infection. I was checked from A to Z to see if there were any signs of cancer. Finally, I had a biopsy of the spinal cord (major operation) and only after that did I get the diagnosis of Transverse Myelitis. I had insisted on getting the biopsy as I didn’t want to go home not knowing what I had. Recovering from the surgery and the burning pain and spasms in my legs took a few more months.

But after that I was walking normally and felt I had almost a complete recovery. Then in May 1999 my left leg started giving me problems again. I was hospitalized a few days later at the MNI. By that time my leg was completely paralyzed. Again I was treated with solumedrol and more tests followed. The MRI showed a shadow from C4 to T7. All other tests came out negative. Ten days after admission, spasms and burning pain started again. But other than that, I gradually regained control of my leg. I should have gone into a rehabilitation centre, but as I had sold my house, I only had three weeks left before moving. Thank goodness I had a lot of help.

I will spare you the details of all of the other reoccurrences. On a few occasions, I was tested to see if it had become multiple sclerosis, but it hasn’t. Only on one occasion did I lose control of my right leg. Of course, there is some loss of feeling in both legs, but my right leg is still quite strong.

For about two years now, I have burning pain in both legs and that occurs daily. It’s worse by night time. I can still walk with a walker, but my endurance level is low. Stairs are getting more and more difficult to handle. Where I live, there are 15 steps to go to the garage. Since I’ve had my car adapted, I don’t want to deprive myself of that facility. I will be moving sometime in July to a senior apartment as I am 69 years old. This way, I hope to keep my autonomy as long as possible.

Since my diagnosis has not changed, I am no longer hospitalized at every reoccurrence. I go to the day centre at MNI where I receive the first treatment of solumedrol. For the other days, I can do it at home with the help of a nurse from the local community services.

It’s been a while since I’ve had an MRI, so I can’t really tell if my demyelination occurs each time. The last time was in November 2002 and it showed damage from T1 to T6.

Over the past 5½ years, I’ve tried different treatments to prevent reoccurrences. First, there was Rebif, but I didn’t react well to that, so it was stopped after a couple of months. Then, cyclophorphamide, a form of chemiotherapy, once a month, to weaken my immune system. After five treatments, I had another attack. So, that was stopped, too. Since February 2003, I’ve been on immunoglobuline. It seemed to be working, but at the end of December, I had another attack and another one ten weeks later. So, now I will have a treatment every four weeks.

I’m lucky that I have a good neurologist who is easy to talk to and who will always return a call. And the MNI is certainly the best place in Montreal for this kind of problem. I wish I knew what triggers these reoccurrences. I know stress was involved at the beginning, as well the backache, but certainly now that is not the case. The biggest cause of stress in my life now is this disease.

I get a lot of support from family and friends, as well as from my support group for MS patients. Generally, my morale is quite good. It’s lower when I’m too tired.

Will there ever be a cure for this disease and others like it? Certainly, that’s what we all hope for!

Yolande Major

340 Boul Hymus, apt.107

Pointe-Claire , Quebec H9R 1G8

Canada

(514)782-1267