Member Stories

Cossy Hough

My name is Cossy Hough. I am 33 years old. I am married and have two pug dogs. I am a social worker. In late December 1999 I caught the flu. I ran a high fever for a few days. I saw my physician a couple of times for trouble breathing and severe coughing. I was put on antibiotics. I started feeling better after about 10 days. I went back to work and noticed my legs were feeling a bit tingling. I also felt really tired. On Wednesday night that week I woke up having severe pain in my back. I called my physician in the morning and was told I had probably bruised a rib. I continued going to work that week and on Friday I noticed I was having some trouble walking and urinating and had an odd band like sensation arund my waist. On Saturday, I was unable to urinate at all. I went to the ER where I was admitted to the hospital and had a series of MRI’s and a spinal tap. The MRI of my thoracic spine showed a lesion and the spinal tap indicated inflammation. I could still walk but was having a hard time with coordination and my legs felt numb. After only a couple days in the hospital I was urinating on my own again and was sent home with a cane. I used the cane for several weeks and then felt I was almost completely recovered except for some numbness in my left toes.

In November 2001, I caught a cold. I had been under a lot of stress as well. I started feeling numb again up to my knees the day before Thanksgiving. Thanksgiving day I ended up back on the ER with urinary retention and trouble walking (numbness. tingling, weakness). It took several weeks to recover again. I decided to go and see Dr. Kerr at Johns Hopkins. I had one more flare up in January before my husband I went to see him in February 2002. He told me I have recurrent TM. He expected the flare-ups to become less and less severe and eventually, maybe, go away. Since then, I have had several flare-ups. They seem to occur after I have been ill and are worse if I have run a fever. I have also developed a pins and needles feeling in my torso, leg cramps and spasms and occasional urinary incontinence. I have to use a cane intermittently. In addition, I have some intermittent ankle edema, which seems to precede more trouble with leg cramps. I fatigue easily and seem to have some sensitivity to heat.

Austin, TX

Erika Nicholson

Here is my story.... The Day My life took a New Path
Hi I just got release last Thursday, June 19, 2003, from an eight-day stay in the hospital.  My diagnosis is Transverse Myelitis.

I don't know very much about this disease.  All I know is one day I was walking, later in that afternoon I was bed confined, and 8 days later I am fighting to walk again.  So I would appreciate any thing you could tell me about it.  

About three weeks before I got admitted, I had trouble with my legs going numb.  I thought it was related to two annular tears I had in my lumbar area l3 and l4 and l5 and s1. Also my discs were dry.  I was going to physical therapy for that to get better.  But I wasn't getting any better but worse.  We always.  I started feeling like my legs were tingling and buzzing most of the time, and at nighttime I could move at all.  I got stuck in the bathtub and bathroom...My husband would have to physically move me back to the bed by dragging me.  In the morning they felt asleep...and when I stood up or walked they would buzz and hurt.  Finally I talked to a neurologist at the hospital where I worked and he said that it wasn't normal for that to be going on with tears and recommended for me to come to his office.  When I had my appointment on June 11th, I walked in ...but wasn't able to stand or move my feet when the appointment was over.  My legs didn't respond so he admitted me.  During my stay they did a spinal tap, and MRI...And came up with this diagnosis.  My spinal cord started leaking cause severe headaches and for me to pass out when I would lift my head off the pillow...They did a blood patch and the headaches started to get better.  Now in the afternoon or evening...I get a headache...and I still have no feelings in my legs.  I am working with physically therapy...and occupationally therapy.  Some tell me 3 wks and I will be better some tell me 3 to 6 months.   

Thank you again and God bless...  Sincerely fellow travelers.

Lewisville, TX               

Yolanda Smith

I don't have a picture to share with you at the moment but I would like to share my story. In 1996 the day after a dental appointment I noticed a strange feeling at my stomach. This feeling was only to the touch. My skin felt as if it was numb, this was on a Tuesday. Each day I could feel this sensation working it's way down. By the end of the week my walk was at a scoot and by the weekend my hands had started to feel funny. I got in right away to see a Neurologist who was very surprised
that I had not lost the control of my bodily functions. After my examination we went to the doctors office and he preceded to dictate a letter to my primary physician and during this time he telling my doctor that he feels that I may have MS. He scheduled me for four MRI's starting with the brain. I had the first MRI and went home a total wreck after hearing that I probably had MS. My intention was to return to work but since I had received that news I was in no shape to return. I called to tell them what I was told by the doctor and right away they let me know that they were by my side. My Director assured me everything would be alright because he step mom had MS and treatment had come a long
way. My boyfriend came home from work because when I called him I couldn't get anything out but a loud sob!

During the wait I was beginning to feel very uncomfortable at the mid-section and called the Neurologist to see if he had received the results. While speaking to him on the phone he began to tell me that he was pretty sure that I had MS. I asked if he had the results of my test and he said no this made me very angry. I told him that he shouldn't give a diagnosis without see the test results. The MRI of my brain didn't tell him what he needed to know so I had to have another. This MRI showed the swelling and he put me on Dexamethasone. It's didn't take the medication long to start working. During one of my followup visits I mentioned that I wanted to start back walking once my legs returned to normal. He told me that it would be fine but I probably wouldn't be able to walk the distance I usually walked. The following week when I returned for my checkup I was wearing a pair of pumps and I had been walking 2 miles a day at lunch time. I must tell you that I did a lot of praying during this time! Everything pretty much returned to normal except my hands. They still feel funny to this day.

Three years ago my grandmother was in and out of the hospital and finally died with congestive heart failure. During this time the virus returned but I knew what I was dealing with this time. I got to the doctor right away and started taking Prednisone. There are a couple of things that will happen and I'm pretty sure they are related to the virus. One thing that is really annoying is the sensation I get on my back. It comes and goes but it feels so funny that I hate it! Well that's my story and I'm still making it.

Dallas, TX

Christie Ellis

In early 2002, I started having some weird numbness on the right side of my back.  I couldn't tell cold from hot.  This numbness progressed down to my right toes.  It never was painful, just annoying.  I figured that I had a pinched nerve, but scheduled an appointment with a neurologist any ways.  By the time my appointment came around, all of the symptoms were gone, so I cancelled the appointment.
 
In June 2003 all of the numbness came back all at once.  Again, no pain, just annoying feeling.  I figured that it would go away on its own again.  But this time after about a week, I began to lose muscle strength and coordination on my left side.  I got in with a neurologist about 3 days after the weakness had started.  He scheduled an MRI immediately which showed a swelling of my spinal cord at about T1.  He admitted me to the hospital and started IV Solumedrol that day.  I was there for 5 days and by the time I left I was about 80-90% better.  The neurologist seemed shocked that things hadn't gotten worse and that I was doing so well.  When I left the hospital, I was on a methylprednisone dose pack.  The third day out, the numbness of my right foot returned.  The neurologist had me bump my prednisone up to a higher taper dose and that wiped out the symptoms.  But once I got down to 30mg the symptoms came back.  I am now back on 60mg/day and doing well.  I rode my bike this morning for the first time in a month and actually did pretty well.  My only problem appears to be keeping enough prednisone going to keep the symptoms under control. 
 
Next week I'm going to the specialist at UT and hope to get alot more information there.  I think that he is going to repeat some MRI's and get more studies.  Right now I am told that I probably have a recurring kind of TM and that I can probably expect for it to return.  Hopefully, there will be something I can do to prevent another occurrence, or get earlier treatment next time. 

Dallas, TX

Leslie Puckett

I am 22 years old. I was diagnosed with acute transverse myelitis in 1994. I was 13 years old then. My story starts at my
home (at that time) on Wednesday, June 29.

I woke up about 10 am to an empty house. My dad was at work and my motherand sister had gone grocery shopping. I ate breakfast on the floor in the living room in front of the TV like most summer mornings. About 10 minutes after I had gotten out of bed, I started to get "charlie horse" pains in the backs of my calves. It moved up and around my legs to my thighs very quickly, switching from numbness to pins and needles. I got up off the floor and moved to the couch to lie down. I tried to stretch out the muscles, but nothing helped. By this time I started to lose any kind of feeling. My mom and sister pulled into the driveway about five minutes after the pain started. I got up off the couch and made my way to the door to call for my mom and barely made it. My knees gave out on me the whole way there. When I reached the door I managed to get it open, but my knees gave out completely after I opened it. My mom ran in to help me back to thecouch. She got up to call my dad to let him know to meet us at the hospital, and by the time she came back over to me I had lost all feeling and use of my legs. This all happened in a matter of 15 minutes.

In the course of my 3-day start at the hospital, I had 6 MRIs (two of my brain and four of my back), a CAT scan, every blood test imaginable, a spinal tap, and any other test you can think to try and figure out what had happen to my spinal cord. Over the first 3 days I was in hospital my disability moved from the top of my pubic bone to T-3 on one side and T-5 on the other. I was in the hospital for 5 weeks. I did not recover any use or feeling of my lower body. Three days before I was released I had a nerve conduction test done. The doctor poked me with a thin needle up my legs and in between each vertebrae of my spine. This was the most painful test I had endured. The results of the test concluded that I have only an 8% chance of ever walking, or regaining any use of my lower body.

I was not sick before this happened. I was told that in laments terms my body made too many anti-bodies and because I wasn't sick they attacked my spinal cord.

A year after I was released I developed scoliosis and required surgery to correct it.

I have been told that I will never walk again, but they say that you should never say never...

I attached a picture of my boyfriend and I from our trip to Vegas this last May.

San Antonio, TX

Cody Kidwell

My name is Cody Kidwell. I am 54 years old. I am a CPA and retired from Exxon Mobil. I took a medical retirement on January 1, 2002. I worked as a financial analyst for eighteen years. I am married and I have a son, daughter, granddaughter, and a, grandson.

On April 8, 2001 I stood up from my recliner and fell in the floor when my left leg gave way. The only symptoms I had were a tightness around my chest and my left foot felt tingly the day before. Same thing on Sunday the next day but more intense. I finalized my annual physical the Friday before and was pronounced in good health by my doctor. I also ran two miles on the treadmill in 22 minutes, not bad for a
fifty-two year old. I went to the ER where I was admitted to the Methodist Hospital in Houston and had two MRI’s and a spinal tap. The MRI of my spine and the spinal tap indicated inflammation. After four weeks in acute care and with mega doses of prednisone I had not recovered any sensation or motor control, I remain paralyzed from T-3/4 and down. After Methodist Hospital I went to The Institute for Research and Rehabilitation (TIRR) for four weeks of Physical and Occupational Therapy. I went to an additional eight weeks of out-patient Physical Therapy in 2001. In 2002 I went to eight more weeks of
out-patient Physical Therapy and bio feedback. That's where they put sensors on your different muscles and measure the electrical output of each muscle. Then they help you to try and recruit more signal from each muscle. I guess it helped a little but not a lot. I have not recovered anything since my original TM affliction in 2001.

I like to hunt and I was an avid fly fisherman. I have shot skeet from my wheel chair and I also went turkey hunting this past spring. I owned a Chevrolet pickup when I became paralyzed with TM. I had it modified
with a crane to lift my wheelchair into the pickup bed. It has a camper shell that lifts side ways with an electric actuator to protect the crane and my wheelchair. It has a side seat that I transfer to that raises me up to the drivers seat level. It also has hand controls. These modifcations were done by Freedom Wheels in Houston, Texas. I have an intense daily exercise routine. In the mornings I do 100 pushups in the bed. These are not real pushups, I lift my chest and abdomen and balance on my knees. I do 600 stomach crunches. I can't do a complete crunch but about 40%. I then do range of motion for my hips and
ankles. I rotate my legs in my hip joint about 100 times each side. Then I do the same for my ankle joints. In the evenings every other day I work out on my standing frame/glider and lift weights for about and hour and a half. On the other day I just stand in the standing frame for an hour.

The picture attached is of me and my wife of 34 years. She meant it when she said for better or worse.

Austin, TX

Bob Cook

THE DATE IS NOW AUGUST, 2003.  I AM NOW SIXTY, LIVING IN HOUSTON, AM MARRIED AND HAVE ONE CHILD, AGE 21.  ONE MORNING, IN FEBRUARY, 1994, WHEN I WAS A FEW YEARS YOUNGER, I WAS BRUSHING MY TEETH IN THE SHOWER, AS USUAL, WHEN I DROPPED MY TOOTHBRUSH.  I REACHED TO PICK IT UP AND NOTICED MY FINGERS DID NOT WANT TO GRASP IT.  I FINISHED THE SHOWER AND WENT TO SIT DOWN AND DRINK SOME COFFEE AND THINK ABOUT WHAT WAS HAPPENING.  I QUICKLY FOUND I COULD NOT LIFT THE COFFEE CUP NOR DIAL THE PHONE, BECAUSE MY WHOLE ARM WAS NOW PARALYZED.
 
MY WIFE WAS ALREADY AT WORK, SO MY DAUGHTER CALLED HER TO COME HOME.  WE WENT TO THE EMERGENCY ROOM THINKING MAYBE I WAS HAVING A HEART ATTACK.  THEY HAD NO IDEA WHAT WAS WRONG WITH ME.  MY ARM RETURNED TO NORMAL THAT AFTERNOON IN THE HOSPITAL.  I WAS ADMITTED AND THAT NIGHT MY LEGS BECAME WEAK AND IT WAS DIFFICULT TO URINATE WITH A TIGHT BANDING AROUND MY WAIST.  BY THE NEXT DAY THE DOCTORS WERE THINKING MAYBE I HAD A STROKE.  MY WIFE CALLED IN A "NEURO-PRO" FROM THE MED CENTER AND HE DIAGNOSED ME WITH TM.  BY THEN I WAS TOTALLY PARALYZED FROM THE CHEST DOWN WITH LOSS OF BOWEL AND BLADDER CONTROL, AND I WAS IMMEDIATELY TRANSFERRED TO THE MEDICAL CENTER FOR TREATMENT OF TM.
 
TODAY, ALMOST TEN YEARS LATER, I AM STILL PARALYZED FROM THE CHEST DOWN AND USE A POWER WHEELCHAIR FOR MOBILITY BECAUSE I WAS BORN WITH ONLY ONE ARM, A BIRTH DEFECT, MAKING IT IMPOSSIBLE TO USE A MANUAL WHEELCHAIR.  I NOW DRIVE A SPECIALLY EQUIPPED VAN TO GET OUT AND AROUND.
 
I HAVE MOSTLY RETIRED AS A CIVIL TRIAL ATTORNEY, AND BOTH MY WONDERFUL WIFE, JESSICA, AND DAUGHTER HAVE STAYED WITH ME THROUGH THE THICK OF IT ALL, AND I CANNOT THANK THEM ENOUGH.
 
WE STILL LOVE TO TRAVEL.  BEFORE TM, WE HAD JUST COMPLETED A TRIP TO SOUTHERN SPAIN AND NORTHERN AFRICA, WHERE I MOST PROBABLY CAUGHT THE VIRUS CAUSING MY TM.  SINCE THEN WE STILL TRAVEL, WITH ME IN THE WHEELCHAIR.  WE'VE BEEN ON TRAVELS HERE IN THE U.S.A. AND ABROAD TO LONDON, IRELAND, SCOTLAND AND WALES, AND PLAN ON MORE.  THE WHEELCHAIR AND MY DISABILITY ARE QUITE A CHALLENGE, BUT WE SEEM TO THRIVE ON CHALLENGES, AND CONSIDER OUR TRAVELS AS A SUPER ADVENTURE INTO THE UNKNOWN WHERE WE'VE NEVER BEEN BEFORE.

Houston, TX

Sherry Scoggins

I am 37 years old. I am married to a wonderful man, Mitchel, and have 2 wonderful children, Kelly and Mitch. Without them I don’t think I could have made it through this illness.

The last of September or the first part of November I had decided to go in for allergy testing. After that I was told to come in every Wednesday for shots. The second time I came in, November 8th, I was asked by the nurse if I would like to have the flu shot. I had never had one but had been encouraged by different people that I should get one. So, I got it. When I told my friend that I had finally gotten a flu shot she seemed concerned. She said they shouldn’t have given me the shots on the same day. If I had a reaction they wouldn’t know if it was from the allergy shot or flu shot. The next Wednesday I went in for my usual allergy shots. That was November 15th 2000. I noticed something unusual on my allergy card but thought nothing of it at the time. They had changed the dates. My card now read that I had my allergy shots on the 8th and my flu shot on the 9th.

On Friday November 17th 2000 I was sitting on the edge of the bed talking to my husband. He said he needed to go to Wal-Mart and I said I would go with him. When I stood up to go I noticed that my right foot had fallen asleep. I didn’t think anything about it and got in the car. When we got to Wal-Mart, approx. 10 minutes later, I noticed that my left foot had also fallen asleep. I thought that was strange but didn’t say anything to Mitchel about it. We went into Wal-Mart and started walking around. Approx. 10 minutes after we’d gotten there I noticed that the numbness had progressed to my knees on both legs. I still didn’t say anything. We were in Wal-Mart approx. 30 minutes at the most. When we got home the numbness had progressed to my thighs. I now thought that something is definitely wrong and told Mitchel what was going on. He said to try a hot bath, which is our cure all for everything. I got in the tub and stayed in there approx. 10 minutes. When I got out of the tub the numbness had progressed to my waist. I called my Mom and an RN that goes to church with us to see what they thought I should do. I was told by both of them to go to the emergency room. Mitchel and I got in our car and went to the ER at College Station Medical Center. By this time I am having difficulty walking. The ER doctor came in to examine me and suggested that maybe I was “anxious” about something. I assured him that I wasn’t but he gave me some Xanax and said I should be feeling better in a few minutes. He came in later and asked if I was feeling any better. I explained to him that I was still having numbness from my waist down. He determines that I just need to take some muscle relaxers. He informs me to take them and see my family physician in a couple of days.

On Saturday November 18th 2000 I am worse. Mitchel has to help me in and out of bed. He has to help me get on and off the toilet. My legs are non-functioning.

On Sunday November 19th 2000 I ask Mitchel to take me to Care Plus to see our family physician, Dr. Roquet. At Care Plus Dr. Roquet is not in so I see the Physicians Assistant that’s working that day. After seeing me try to walk a short distance she determines that I need to see a neurologist as soon as possible. She sent me home and told me that Care Plus would call me Monday and let me know what neurologist I’d be seeing and when.

On Monday November 20th 2000 Care Plus calls to tell me I have an appointment with Dr. Maraist some time in December. I’m not sure of what date they told me. I then threw a fit on the phone and explained to them that I could not walk and needed to be seen right away. I asked if I needed to go back to the Emergency Room in order to be seen sooner. She said she’d call me right back, which she did. She said for my husband to take me to the Physician’s Center right away. When we got there they were waiting outside with a wheel chair. I was immediately taken to a room and assessed. Most of the rest of my stay there is a blur. I’m not sure whether they started steroids right then, but it was pretty quick. I had 2 MRI’s done, a spinal tap, and a lot of blood work done. I stayed in the Physician’s Center for 5 days. I started physical therapy around the 3rd or 4th day that I was there. When I was released I still had to use the wheelchair and could use a walker if it was a short distance. My mom came all the way from Kentucky more than once to help take care of me. I started physical therapy at the Sports and Back Clinic sometime in December or January. They got me out of the walker and walking somewhat on my own.

From November 20th 2000 to the present. I have tried different drugs in different dosages. Some of which make me very sleepy or mess with my eyes-making things blurry and out of focus and make it hard to concentrate on what I’m doing or what’s going on around me.

I have had to change my family physician and my neurologist because of a change in insurance at work. I have gone to physical therapy one more time through Scott & White. No real progress was made in strengthening my left leg. I was given some exercises to do to keep it from stiffening up. I have had several more MRI’S done. I have had numerous other tests done also.

I am no longer able to do the things that I should be able to. I tire very easily. I can no longer walk long distances, sit with my feet down for very long or stand very long. I am most comfortable in a recliner with my feet up or in bed with a pillow between my knees (I can’t stand for my legs to touch). My legs, especially my left leg, are very sensitive to touch and to temperature. I can no longer take baths unless someone is home just in case I need help getting out. The temperature of the water can’t be very warm because of my left leg. Mitchel usually runs my water and what is just barely lukewarm to him is scalding to my left leg.

I can’t drive for long periods of time because my legs start aching. I akin the pain of transverse myelitis to the growing pains you had as a child. Except you would double or triple that pain. My current neurologist has told me that I should not expect any further progress in my getting better. It has been 2 years and 10 months since I got TM. If there were going to be any progress we would have already seen it.

I am unable to fulfill my role as a wife and mother. My husband does the majority of the housework and my children help. Even the simplest of things that I took for granted are a chore for me. I am unable to get down on my hands and knees. I was trying to clean out the hall closet and got down on my hands and knees to get something. I had to crawl to the bedroom so I could hold onto the bed and get up. I bought tennis shoes with zippers so my family wouldn’t have to retie my shoes all the time. I can hardly bend over and pick something up if I drop it.

Lately I have been experiencing a lot of pain. I have gone from 1200 mgs a day of Neurontin to 3600 mgs. I take 50 mgs of Amitriptyline at night to help me sleep. I have a lot of back pain and pain in my left leg. My right leg used to be ok but now it has decided to join in.

I have an appt. in Baltimore at John Hopkins for November 3rd. Hopefully they can help.

My prayers are with all who deal with TM-those who have it and those who help us through it.

College Station, Texas

Cindy Henson

I am a 43 year old female, who is also a licensed social worker.

I was diagnosed in 1999 with Systemic Lupus Erythematosus. I had been having problems with walking, tripping and falling for some time. I had tested with a positive ANA with a speckled pattern , but my GP had not done additional studies to find out why. At this point, I was not educated well enough on the subject to ask questions or even be concerned...he didn't appear to be. At that time, my Neurologist (who had done multiple studies and had made the diagnosis) put me on Prednisone. A short time later, I was also being followed by a Rheumatologist who put me on a low dose of Methotrexate, but was having more difficulty walking and was totally exhausted all the time. I have neuropathy in all of my extremities, so the tingling didn't concern me.

I was working full time and it came to the point one day that I couldn't even get up out of my office chair. I called my Neurologist and she sent directly to the hospital. They did a battery of tests including an MRI of the brain and lumbar puncture. It was at this time that I was diagnosed as also having TM. They started me on 3 treatments at one time: plasmapheresis, cytoxin IV's and boluses of a high dose of steroids. I spent 10 days in the hospital and then another month of OP plasmapharesis treatments. I also have the antiphospholipid syndrome, which causes my blood to clot abnormally.

After this period of time, I was confined to a wheelchair with paraparesis...I can stand to transfer but can't walk. The Dr's are not sure if this was due to the TM or the antiphospholipids causing blood clots on my spine. It all seems like a maze!!!

I was forced to retire in August of 2000 because I was spending more time in the hospital than at work.

Amarillo, Texas

We are seeking stories of people with TM in Texas as well as photographs to post on our website. If you'd like to share your story and/or a photograph please email this information to Cossy Hough at cossyh@yahoo.com.

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