In Their Own Words

In each issue of the newsletter, we will bring you a column which 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. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Deborah Capuano
Wakefield MA

My name is Deborah Capuano. I am 48 years old. I have two sons, Andrew, 26 and David, 24, who both live out on their own. I am divorced and live alone. My story sounds somewhat like Kerry DeFilippo's of Chicago.

I was away on vacation in March of 1997 in Aruba. I noticed while walking on the beach that my feet felt funny -- tingling. I thought maybe something bit me. Later, I went horseback riding in the mountains. Nothing like what you see on television when they show someone galloping on the beach. We went over a mountain to get to a beach and I was scared to death I would fall off the horse -- or that the horse would fall off of the mountain with me on it.

Because of my fear, I pressed my feet hard into the stirrups, numbing my feet some more. The rest of my vacation (a few days), I was bothered while walking. When I returned home, I was numb from the waist down. My feet felt like blocks of ice and sitting was very uncomfortable as the numbness seemed to intensify. Before the full onset, which did not take long, I noted at night, while falling to sleep, I would have the shakes inside to the point where the bed felt like it was vibrating.

I saw my primary doctor, Andrew Lim, who ran some blood test and sent me to a neurologist, Dr. Paul Chervin, who ran many tests; four MRI's, including brain (I wanted the brain scan to hang over my desk at work for proof -- as I'm blond, you can imagine the jokes as I went for a brain scan)! I also had blood tests and a spinal tap.

End result -- Dr. Chervin told me that I had Transverse Myelitis. I never heard of this and to boot, there were no answers as to why I had TM. I went to Dr. Chervin thinking I had harmed myself while horseback riding or maybe I had swallowed something evil when I snorkeled, as I believed that I had swallowed the whole ocean. Not so. I took prednisone, 60 mg. for one month. Nothing. That was it for me. It has to run its course.

I was always active and now I can't even drive myself to work, because I can't feel the pedals. I feel like I walk like a robot, but after reading other stories, I praise the Lord that I do walk. I feel like I have a pair of panty hose from hell on and I can never get them off. I have the hot burning feelings in my back and my neck sometimes feels weak. I have control of my bowels and bladder. I drink a lot of water and I do go to the bathroom a lot. I have a sensation or a pressure when I need to use my bowels, but I do not feel the sensation when all passes.

I've continued to work. My co-worker and friend, Ellen Bergeron, has picked me up and dropped me off to work. I am a medical biller and sit a lot, but -- or should I say butt -- I get up a lot and stretch and change position. The beginning of this was harder to deal with and I wanted to stay home and I had to sometimes. Going to work made me stay somewhat normal. With support from family and friends, I tried to keep a normal schedule. At the end of the day, I couldn't wait to go home and go to bed. Always tired.

Also, and I have not read about this, I told the doctor that I had this sensation when I dropped my head (chin to chest). I have a shooting vibration that goes from my neck and straight down both legs and my feet. It occurs more when I am exhausted. But I almost like it, because it is a feeling and beyond that, I had none. This is called Lhermittes sign?

I am in my eighth month. The hard numbness has gone, but the tightness remains within, as under my skin. I can feel touch now, but it is almost annoying. I am back to driving; actually, I drove in the fourth month as my feet had what I call a release, but an asleep-like feeling, tingles.

And so it goes. I'm told I will get well. I know I'm in for some pain as this leaves. I have to say that although I've been lucky about the pain, I have been bothered with achy knees. I was told mostly women are effected in their joints with this? I know I have used my body differently through this. Can't wait for a good night's sleep; rolling over is a wake up job to flip your strange legs.

My sisters, Susan and Doty, helped me find you on the internet. I do not have a computer. But I was so excited to hear of this support association with Transverse Myelitis. I felt like I was the only one in the world with this. Not that I'd wish this on anyone, but you feel power in numbers and maybe our goals will be reached when we all help each other.

This is what I have done. Once a week, I went to my friend's, Donna Beal's, who is a message therapist. She has helped me immensely with positive thinking -- she is very holistic and we even went to a healing session together -- very powerful. She has been very generous, as this is her business.

I have read Spontaneous Healing, by Andrew Weil, M.D. -- a powerful book that can help give hope. I really loved this book. I listen to music. I've gotten into healthier eating and take herbs -- Astragalus, Vitamin C, Flax Seed Oil -- to help my immune system. In Dr. Andrew Weil's book, he makes a comment, Illness can be a gift. Well, that's one to think about. You have no choice but to slow down and take a good hard look at your life.

I've always liked to write (surprised :)?) -- mostly poems and some songs. I never did anything with this. But the positive thing out of my Transverse Myelitis is that I got one of my poems published! Talk about slowing down and taking time.

I continue to heal. I pray all the time and thank God for people who care, like Deanne Gilmur who founded this Association for people like us. God bless us all and especially the Association officers.

Debbie Ziler
Akron, Ohio

I received a letter from Debbie Ziler in November, 1997. Debbie was diagnosed with Transverse Myelitis in August, 1986. She has provided us with a letter that she had sent to Ann Landers about her experience with TM to offer support to another person who had been given the diagnosis. I have included both of her letters in the column.

November 13, 1997

I just received the October Newsletter which prompted me to complete the survey I copied from the Web. I've also included a medical history prepared in 1988 for the Cleveland Clinic, and a letter I wrote back in June of '88. Publish it if you think it would be of help to anyone. The onset of my illness dates back to August of 86. I am one of the longer-term survivors you are looking to hear more from.

Not that I wanted a reminder, but I wish I had kept a diary of events during my illness so I would have detailed information of what actually took place which might have been helpful to others. It was just so overwhelming at that time that I never got around to it. I've answered the survey questions to the best of my recollection, but I'm sure I've forgotten some things. It was not a time in my life that I wanted to etch in stone.

My recovery was fairly quick. Within 6 months I was back to work (on a part-time basis at first, working back to a full 40-hour week eventually). I am left with a neurogenic bladder, (I am now able to void some on my own, but not always and never complete; I use intermittent catheterization), abnormal temperature and skin sensation from the chest down remain, and periodic lower back pain still persists with tingling in my legs. I've learned to live with the low energy level and interrupted sleep pattern due to the neurogenic bladder.

What you're doing is a wonderful thing. I first found out about the Association through the Web. With mixed emotions, I read everything I could -- sometimes not wanting to see what I was reading, but still forging on. Knowledge is still better than being in the dark. Thanks for all your efforts.

Sincerely,

June 9, 1988

Dear Ann:

This letter is written to the gentleman diagnosed as having Transverse Myelitis. His wife wrote to you asking for direction.

I am a 34-year old woman who in August of 1986 was diagnosed as having Transverse Myelitis. I was temporarily paralyzed from the chest down. The illness also shut down bowel and bladder function. I have still not fully recovered normal bladder function. However, after 2-1/2 months in the hospital, 6 months off work and many hours of therapy, I am back to full-time work.

The main reason for my writing this letter is to relay to this gentleman to not give up on himself. A week into my illness, one of the young neurosurgeons in attendance told me I would have a 50-50 chance of ever getting out of bed again. I thought that was an awful thing to tell someone and I refused to believe him. I tried to set goals for myself from that day on. They told me I'd be ready to be transferred to a rehab hospital in two weeks -- I told them I was ready to go 1 day short of two weeks -- that was my first victory -- I felt in control (as much as you possibly can be in this situation).

There are certain side effects of this illness that just can't be hurried through. Neurological damage takes time to heal. But don't give up on yourself no matter what the doctors have told you. The mind is a very powerful thing if you'll let it work for you and not against you. I've read cases where people have rid their bodies of tumors without invasive surgery -- just by thinking them away. Scan the literature and read as many success stories as you can. Believe in the inner power of healing.

No doctors cured me. I cured myself. They were only there to administer sleeping pills so I would get a good night's rest -- and prescribe antidepressants for depression -- to check vital signs -- and to collect their fee. Maybe I'm being a little too harsh -- but this illness is so new to the medical profession that they really don't know what to look for. They tried to grow cultures of the virus to isolate what type it was, but had no success. After five spinals, I'd had it! I was the first case my family physician had ever seen!

This is a very hard illness to deal with -- especially when it afflicts someone healthy and full of life. For me, family was my salvation. I'm not out of the woods yet; I've been left with nerve damage from the chest down -- the result of this being a loss of normal sensation in these areas; it does not alter my life in any way other than cutting and bruising myself and not knowing it until the marks show up. On the plus side, mosquitoes are no longer a nuisance -- I can't feel the bites, thus no scratching. I cannot state strongly enough the need for a positive attitude -- I know it's hard, but I truly believe it hastened my recovery.

I won't deny that it's been a long hard road back to recovery. I don't think, knowing what I know now, that I'd be able to do it again -- but I did it! If there is anything else I can say or do to give you hope, please do not hesitate to contact me. Best wishes to you,

Terri Miller
Brandon,MS

Dear Sandy:

I wrote to you back in September when I was first diagnosed with Transverse Myelitis. Today, 4 1/2 months later, I am definitely not that same person inside or out. Please share this letter with the rest of the troops so they can understand that there is hope for this "condition."

At the time, I wasn't sure of my fate. My area of lesion was at l5-s1, I work for an orthopedic surgeon, so when I started having problems, we immediately thought herniated disc. He sent me home for bed rest and a medrol dose pack. He didn't want to do any surgery on me, so his brother, being a neurosurgeon, he decided it would be best that he take a look at me. His brother was out of town, so I laid at home with bed rest for almost one week before I was seen again. It had started with one foot tingling, then progressing to the knee, then the numbness started. By the time the brother got back into town, both legs were numb, I had incredible pain down both legs, bowel was involved and I had what they call saddle anesthesia. Everywhere you would sit on a saddle I was numb.

I saw the brother and he immediately saw my symptoms and sent me to the hospital, thinking that this was some sort of neurologic problem and not a disc. This was a teaching institution, so he thought I would be in the best place. This was a Monday night. By Tuesday night, I had my first MRI of the brain. This showed nothing. Then my MRI of the spine. There it was, a lesion at l5-s1. I couldn't believe that this little area was causing all this problem. They immediately did a spinal tap to send off for multiple sclerosis, and started me on a five day course of solumedrol 1000 mg. Daily. This seemed to help some.

After my course of steroids, I was sent home. I was to be under the care of a physician that was out of town. I was to see her in two and one half weeks. The physicians sending me home didn't prescribe any physical therapy. They sent me home on a medrol dose pack and pain medication because I still had severe pain.

I laid in bed for two weeks and continued to regress. Finally, my physician saw me only to inform me that the physicians in the hospital forgot to draw blood to go with my spinal fluid for my MS test, so the lab just threw my fluid away. Finally, after a re-tap, this came back with no suspicion for MS. My doctor started treating me for my Transverse Myelitis. The most important factor that she did for me was physical therapy three days a week. She also replaced my pain medication with a medicine called Neurontin, which helped my pain tremendously! She also started me on Metrotrexate once a week, three pills, twelve hours apart. This made me very ill. Finally, she told me of a drug called Zofran to help with this. You take it one hour before chemo and it would help with the sickness. It worked. I didn't even know I was taking the chemo. This was an experimental thing she was doing, but reports showed it worked. It was to stop the progression of the lesion.

Within a month and a half of diagnosis, I was off my walker, to a cane, at work for four hours a day and feeling like I could go back full time! I guess I wasn't convincing enough, so I worked that much harder!! Within two weeks, I was off my cane, and working full time. I worked very had to get my strength back! This is very important. You can build muscles and walk even if you don't feel your legs or feet! It can be done.

The physical therapist that I had was wonderful. She worked on upper body strength, lower body strength, balance and propriaception; all this was completely gone, except for the upper body strength. It seemed like that was all I had. Once I started getting my strength back, there was no stopping me! All the rest seemed to follow with time.

The last of December, the 29th to be exact, my daughter's first birthday, I had a repeat MRI. The chemo worked, my lesion was gone!!! Nothing there except some scar tissue which was to be expected. Now it is February 2, 1998 and I still have some numbness in my feet, a small amount up the lateral aspect of my legs and a small amount of "saddle anesthesia," but I feel that I am continuing to progress.

I realize that I am probably a story that most people don't hear about; not as bad as others. But that is why I am writing. There is hope to beat this thing!

I would love to give any inspiration I can to any patients newly diagnosed or to those who have had it for years! You can't let this thing get you down. The moment you think it is, you just work that much harder to make sure it doesn't! I have a wonderful husband that worked hard for me during this time. He took care of my family so I could take care of myself. I had a lot of support from my mother and father, sister and brother, and the church that I grew up in 30 years ago sent out prayers everywhere. They took up collections for me while I was out of work. I had a lot of love!!!!! This, too, is important.

If I can be of any help to anyone out there, please let me know! This is very important to me to let people know that this thing doesn't have to be as bad as you might think. Thanks for letting me share!

Sincerely,

Terri Miller, 37, and looking forward to a life filled with hope and happiness!

Paul Sullivan
Phelps, Kentucky

Hey, Sandy, this is my story. But first of all, thanks so much for all you have done so bummys like me can understand this TM a little better.

On February 25 of 1990, I was called out from my home by a young sister who had a friend in school that was thinking about killing himself. So, an elder called me up and asked if I would care to check things out, because the boy and I had about the same upbringing. So, off I went at 2:00 AM to find the boy and try to help. When I found him, I talked him into going to drink some coffee and talk at a nearby restaurant. So, we did and I got through to him a little. Got him talked into coming home with me to lift weights and check a few things out in the good book, the Bible, to help him see that he was not alone.

When I got in my truck, I saw I was low on gas, so I stopped to fill up and get a pop or two. While I was paying for my gas, a robber came from nowhere and stabbed me in the back between T7 and T8. Boy, did it hurt. It left me with my right leg stiff. It would not work. He had hit my spine with the tip of the knife. And I was down for some while. Also, got staff infection from it. Had to take antibiotics for six weeks to kill it out. But through hard work, I mean hard, I have lifted weights for 30 years now, and no workout was as hard as me getting my toe to start working. But I did. And one thing after another came back until I just about got it all back. Except for the dorsalflex. I had toe drop.

But after a while, I got so spastic, there were times that the attacks would last up close to two hours and the pain got to where I could not stand it. There were so many times I would pray to die to get some relief. Then one day, my doctor in Cincinnati, Ohio said, let's put a battery in your back to stop them spasms. So, I said, anything. And, you know, it worked -- it worked good to the point to where I was out running in the yard with my boys. I was so happy. But after about three or four months, scar tissue grew and it stopped working and I was right back in the same mess I was in before. So much pain, and the tremors got even worse. So, the doctor said, let me put a pump in ya' and put Baclofen in it. But I had a reaction to it, so he put Morphine in it. And it worked. But the side effects were bad to the bone. Each time I went for a refill, I would vomit for a week, at least. But I could walk without pain. Before, each time I would use my dorsalflex or hamstring, it was like hitting my funnybone in my elbow. I just could not do it. It just hurt too much. But I have got to say the Morphine they put in, it stopped all that.

But after about a year or less, I started getting dizzy to the point where I went and saw three different doctors. But they all said that nothing was wrong. But after about a month of getting weaker and weaker, I got up one night to go to the bathroom only to fall to the ground. I was having a heart attack from the Morphine. It caused my blood pressure to drop to 90 over 40 or less. So, they kept me in the hospital in ICU for three days, then flew me to Lexington, Kentucky where they done a heart catheteritization. At the same time, they changed the Morphine. They said they thought I had got a bad batch.

Everything went OK until the next morning when I woke up. I had never vomited so hard and long, and my right leg was numb from the foot to the knee. I told the doctor something was wrong, but he said it was just a side effect to the new Morphine. So, he checked me out of the hospital. But I knew something was wrong, so I went only across the street and checked into a hotel. I went to bed. Never have I been so tired. So, my wife tried two more different times to get the doctor to see me only to turn me down saying it's only a side effect of the new medication. So, as the day went on, so did the numbness until it got in the other leg and up to my waist in both legs. Now I am a complete, and I do believe it all came from the Morphine. What do you think? After I checked back in the hospital the next day, they cut off the pump and filled it with water. And you know, I have not been dizzy since.

So, if any out there gets a pump, please watch out for dizziness and weakness. If it comes, be sure to get it checked out. And if any of the symptoms come on you like me, make the doctor see ya'. Don't let him say, it's just another side effect. Well, I guess this hill-billy has said enough. If I can be of any help, let me know.

Your hill-billy friend,