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Comment by Tonya Ankeney-Audras mom on December 8, 2009 at 3:12pm

My little girl was diagnosed with TM and A.D.E.M when she was 10 months old after a severe adverse reaction to her vaccines. In the beginning she was paralyzed from the sholders down, trached , on life supports and spent 6 months in icu and inpatient rehab. She had her trach removed at the age of three .. She is now 7 , has limited use of her arms and still paralyzed from the waist down and confined to a wheelchair. I wish i would have found this place sooner.. I have so many questions and i dont even know where to begin.. After all she has been thru she still wakes up with a smile everyday.. If you have any questions please ask, i will answer them to the best of my ability,,, Thanx so much, Tonya

Comment by Donna Hart on December 8, 2009 at 9:29pm

Tonya, Until this year, I was not aware of any children with TM. Things seem worse when they effect our children. My friend's grandson is 5 and got TM when he was three. I wish I had something to offer you.Your daughter sounds so sweet, still smiling. That's great. Take care of yourself and her. I'm thinking of you. Donna

Comment by Emily's mom on December 27, 2009 at 9:32pm

The evening of November 23, 2008 is when Emily’s story starts, all of the sudden she got a horrible pain between her shoulders. Later on that night she laid down to rest and her nightmare started.
Emily woke up on November 24, 2008 unable to move anything from the neck down. We took her to the closet emergency room, the attending, Dr. Henry, immediately did an MRI of Emily’s spine and said that he believes that Emily has Transverse Myelitis. He gave Emily a high dose of steroids and sent her by ambulance to the nearest hospital that had a pediatric neurologist. There Emily met Dr. Gotoff, a pediatric neurologist. Dr. Gotoff did not perform any of her own MRI’s, she just reviewed the MRI done from the emergency room in State College, PA. Dr. Gotoff kept telling us that MRI’s were going to be scheduled but were never done. Dr. Gotoff just said that there was no evidence of Transverse Myelitis; that what Dr. Henry saw was artifact; she concluded that it was Conversion Disorder. She also told us that Conversion Disorder was very common and it was up to Emily when she decided to gain control of her body again. Later we found out that Conversion Disorder is not as common as Dr. Gotoff suggested.
For two and a half full days while our daughter was in her care, she received no steroids and was constantly being told that it was all in her head and if she just thought real hard about moving, she would. Yes, Dr. Gotoff, a pediatric neurologist was telling a twelve year old child that she couldn’t move her body because it was all in her head. This statement is verbatim from Dr. Gotoff’s mouth. The two-three days that Emily was under her care, she was only emptying her bladder once a day and never had a bowel movement, all while eating and drinking a regular diet. We brought this up often with Dr. Gotoff and the nurses and no one seemed concerned. We later found out that this is also another symptom of Transverse Myelitis, yet Dr. Gotoff was not concerned and sent Emily home with only a plastic bed pan. While there Emily also had one pupil bigger than the other one, a nurse had noticed this as well some time through the night while checking her pupils, yet nothing, again, was done.
When we returned home with Emily, we found that we could not care for Emily as she needed; she still could not move her body and was still only emptying her bladder once a day, still no bowel movement at all. We attempted to get a hold of Dr. Gotoff to receive some help taking care of Emily, more than just a plastic bed pan; she quickly told me that Emily could have nothing because she will never get any better.
After being home for one day, we knew that there had to be something else wrong with our daughter and we could not care for a child who could not move her body at all. We decided to take Emily to Hershey Children’s Hospital for a second opinion. Immediately after arriving there, the Dr in charge of the ER looked at the MRI done from the State College ER, and examined Emily. He lifted her leg, and let it fall and told us that we did the right thing in bringing our daughter to them because she did not have Conversion Disorder and he knew this by just simply dropping her leg.
Finally, our daughter received that care that she deserved in the first place, Hershey did do their own MRI’s and other tests to be sure of the diagnosis and Emily did have Transverse Myelitis, and they were extremely concerned that she was only emptying her bladder once a day and struggled for a week or more trying to get her to have a bowel movement. Emily received five long days of steroid treatments and then was transferred down stairs to the pediatric rehabilitation unit to learn how to walk again, use her hands and take care of herself in new ways.
Emily spent a week on the pediatric floor at the Children’s Hospital in Hershey Pa, receiving high doses of steroids to bring down some of the swelling around her spinal cord. Slowly Emily regained some movement of her right side, however very weak; and very little on her left side. She also has experienced bladder and bowel dysfunction, numbness throughout her torso, the inability to feel hot or cold on her right side, as well as Horner’s syndrome. She was then transferred down to the pediatric rehabilitation floor for a few more weeks, where Emily received 5-6 hours of physical, occupational and musical therapy each day; where she learned new ways to dress herself, bathe, and attempt to walk again.
It has been almost a year and it takes Emily great effort to achieve normal everyday things. Emily regained almost normal use of her arms, however she still has difficulty walking, she must wear a leg brace, and forearm crutches, and must use her wheel chair when required to walk longer to thirty minutes. She also suffers from frequent back pain and extreme fatigue. She can not feel hot or cold on her right leg; has numerous sensation issues and issues with bright lights. She has gone through almost an entire year of physical therapy, occupational therapy, and aquatic therapy. She is on a small break from therapy and will soon start physical therapy to work more on her gait as well as massage therapy for her tight and sore muscles at a facility closer to our home.
She can move the right side of her body, and she is now able to move her left side with the exception of her left ankle (however she is very weak). She still has numbness throughout her torso and hands and still cannot feel hot or cold on her right side, the doctors do not know if that will ever return. She has a brace that she must wear on her left leg and uses a wheel chair for distance, and she is able to walk very short distances using fore arm crutches. She has also returned to school however because of extreme fatigue problems she only goes half days. Emily also experiences severe anxiety and panic attacks several times a day because she fears that she will wake up again paralyzed because she has numbness that comes and goes throughout her hands. Emily is still struggling each and every day, but not once do you not see that beautiful bright smile on her face. She has a long way to go. She faces many obstacles as do all of you. I’m sorry if I have rambled and repeated myself, this is the first time I have really spoken to anyone and I wanted to try to touch on everything. Thank you for listening…Emily’s Mom

Comment by MARILYN on January 6, 2010 at 8:03pm

HELLO MY NAME IS MARILYN I AM 42 YRS OLD. THIS IS MY TM STORY. IT WAS DEC. 19, 1979 WHEN MY LIFE TURN AROUND. I WAS GETTING UP TO GET READY TO GO TO SCHOOL WHEN ALL OF A SUDDEN I HAD A PAINFUL PAIN RUNNING DOWN THE BACK SIDE OF MY RIGHT LEG. I REMEMBER SCREAMMING SO LOUD BECAUSE IT WAS SOMETHING I HAVE NEVER FELT BEFORE. ONE OF MY OLDER SISTER RAN IN MY ROOM AND ASKED ME HAD HAPPEN, I TRIED TO GET UP FROM MY BED AND I JUST FELL TO THE FLOOR I FELT AS THOUGH THERE WAS A BRICK WALL ON MY LEGS, MY SISTER TRIED TO PICK ME UP BUT COULD'NT, BY THIS TIME MY DAD HAD CALL THE EMS, THEY CAME AND TOOK ME TO THE EMER. ROOM. THERE I WAITED TO BE CHECK BY A DR.. I WAS NOT ABLE TO GO TO THE BATHROOM, MY BELLY WAS GETTING BIGGER AND BIGGER. I REMEMBER DIFFERENT DR'S COMING IN AND OUT OF MY ROOM AS THEY WERE PUZZLED, AND DID NOT KNOW WHAT WAS WRONG, THEY STUCK ME WITH PINS AND NEEDLES, THAT I DID NOT FEEL THEY ACTUALLY CUT ME WITH A RAZOR (SMALL SLIT) ON MY LEG WITHOUT ME KNOWING BECAUSE THEY THOUGHT THAT WHAT I HAD WAS PSYCOLOGICAL. I REALIZED MY LEG HAD BEEN CUT WHEN I LOOKED DOWN AND THERE WAS BLOOD ON MY WHITE SHEETS. ONE DR. CHECK ME AND ASKED ME IF I WAS PREGNANT!!! I WAS ONLY 12YRS OLD..THE OTHER DR. SAID THIS WAS PSYCHOLOGICAL TO GO HOME. SO THEY SENT ME HOME. TO MAKE MATTERS WORSE THEY DID'NT GIVE ME A WHEEL CHAIR HOW ABOUT MY OLDER BROTHER HAD TO CARRY ME HOME.

THE FOLLOWING DAY I WOKE UP THE SAME I WAS PARALIZED FROM MY WAIST DOWN. MY FRIENDS FROM CHURCH CAME TO SEE ME AND I REMAIN THE SAME . "ITS FUNNY BECAUSE I DIDNT REALIZED HOW SERIOIUS THIS WAS SO I LET MY FRIEND BITE MY BIG TOES BECUASE THEY COULD NOT BELIEVE WHAT WAS HAPPENING, AND NEITHER DID I" WE REALLY ALL LAUGHED ABOUT IT UNTIL I STARTED THROWING UP, AND MY BROTHERS FRIEND SAID LETS TAKE HER TO THE HOSPITAL WHERE HE WORKED. SO THEY DID. THERE THEY TOOK REALLY GOOD CARE OF ME THEY ADMITTED ME AND I STAYED THERE 1 MONTH. THEY TOLD ME I WOULD NEVER WALK OR HAVE CHILDREN EVER!! WITHIN THE FIRST MONTH AT THE HOSPITAL I MOVED MY TOES AND GOT SOME FEELINGS BACK ON MY LEGS. I WAS SENT UPSTATE TO BLYTHEDALE CHILDRENS HOSP. IN VALHALLA, NY. THERE I STAYED ALMOST 1YR WITH LOTS OF THERAPY AND A GOOD STAFF. I LEARN TO TRY AND LIVE WITH TM. I COMPLETED 8TH GRADE I MADE IT BACK HOME IN TIME FOR 8TH GRADE GRADUATION. THEY (MY SCHOOL) HAD A GREAT CERMONY FOR ME. AFTER I GOT HOME THATS WHEN IT ALL HIT ME! STARTING HIGH SCHOOL WAS THE WORSE! DEPRESSSION KICK IN AND I TRIED SUICIDE QUITE A FEW TIMES, BUT I THANK GOD IT NEVER HAPPENED. I'VE CRIED ALOT AND SCREAMMED ALOT AND STILL WONDER WHY? BUT I STOPPED WONDERING AND I LEARNED HOW TO ACCEPT MYSELF AND KEEP THE FAITH!!

I NOW HAVE 3 BEAUTIFUL CHILDREN, 6 GRANDCHILDREN, AND SOMEONE WHO REALLY LOVES ME!! JUST THE WAY I AM!!! I KNOW ALOT OF YOU HAVE JUST STARTED DEALING WITH TM. AND I AM SO SORRY, ALL I CAN REALLY TELL YOU IS TO LIVE! LIVE LIFE TO THE FULLEST. I STRONGLY BELIEVE THAT "GOD DOES NOT GIVE YOU MORE THAN YOU CAN'T HANDLE!!! GOOD LUCK TO EVERYONE AND GOD BLESS!!! LOVE♥MARILYN♥

Comment by Karin Delsignore on January 23, 2010 at 11:13pm

My TM story comes in stages over a year apart.

In March 2007 when I sat up in bed, I felt like I was moving in slow motion. I felt that the signal from my brain to my body was getting stuck and that every movement was not smooth but jerky. Hard to explain. This then went down the back of my right leg and lasted for 3 weeks. I had said to myself at the time, if it lasts a month I will see a doctor. So I didn't go then.

Then in July 2007 after an extremely intense 3 hour aerobic class I went home and realized I had pins and needles in both arms from the elbow down and both legs from the knee down. This time I called the neurologist right away but wasn't able to see her for 5 weeks. Had a brain and cervical spine MRI in August and all was clear. However, the tingling in my feet has continued to this day. I am so used to it that I don't even think of it too much unless it gets really bad and goes all the way up to my hips (after walking a lot usually).

Fast forward to March 2, 208. It was a Sunday and while I was sitting in church I noticed that my right leg felt like it was sunburned and the feeling was coming in waves. All that week I felt like my leg was on fire. I thought I must have a blood clot or something and went to the ER. But a week later March 10th extreme mid back pain woke me up out of my sleep. I could not lie flat at all, if I did I couldn't breathe. So I slept sitting up for a week and had 3 back massages. Then 3 days later I started feeling weird numb sensations on the inside of my right thigh which slowly went down my calf to my toes and up my thigh to my hip. This numbness peaked around the 2nd week of April. During this time my right leg became very weak and numb and dead feeling. I was unable to walk up stairs without pulling myself up the banisters and felt like I was on a boat that was docked. I felt off balance and uncoordinated. I went to a vascular surgeon, podiatrist, orthopedic dr and finally a neurologist. The neurologist did the standard tests and I could not jump up and down on the right leg and could not do a deep knee bend and my gait was very stiff. Jeans felt like sandpaper and itched so bad I had bruises up and down my thigh from scratching. My leg felt like frozen hamburger meat and felt like it weighed 500 lbs. I told everyone that it feels like I have one humongous clown shoe on that I have to lift up and put down when I walk.

In mid April I finally had my MRIs. The thoracic showed (From the radiologist's report)

Evaluation of the spinal cord demonstrates the presence of a small, approx. 4 mm region of abnormal intramedullary T2 prolongation effect involving the right dorsal portion of the spinal cord at the T10-T11 level. The singal cord maintains normal size. Although nonspecific, this finding may represent a solitary focus of transverse myelitis.

IMPRESSION

Transverse myelitis is suspected. Further clinical correlation recommended.

During this time I also had the EMG/NCV tests which showed no peripheral neuropathies or compressed nerves. Although now neuro thinks I have femoral nerve damage (my big toenail also stopped growing for over a year after this happened, just thought I'd throw that in :). I also had SSEP and VEP which were also normal. Did not have spinal tap because by this time it was June 2008 and neuro said he didn't want to do it so late. Wasn't going to argue with him.

When I went back to the gym around 3 months later, I noticed that after 10-20 minutes of aerobic activity my right foot started jerking around when I jumped up and landed on it. It would not roll toe through heel smoothly. It made jerky movements. My podiatrist told me that this was called clonus and was a sign of MS. The podiatrist was aware of all the numbness as this was present each time I see him for neuromas in my feet. I pointed this out to the neurologist and he was trying to evoke the clonus in the dorsiflexion position and said that there was some clonus but it was not over "5 beats" and was not severe. This goon was trying to tell me it was all in my head and I must be stressed. I wanted to smack him upside the head.

Well the other neuro who did the EMG told me that TM sometimes is a first sign of MS and that with my other "episodes" he is following me for MS. I have my MRI for spine next week and brain in February so we'll see what that all shows.

I have the usual residual fatigue and weakness and return of symptoms when I overdo it or walk too much. Oh and I have spasticity in my right hip flexor and around my hip. Am not on any meds because I'm not really in pain, just the spasticity pain in hip, and my problems are more fatigue, weakness and numbness that returns.

But I thank God everyday because I am walking and pretty much back to 90% normal and I will take it as a gift.

Comment by Cathy Mae Krusberg on February 14, 2010 at 6:55pm

In December 2007 got out of bed and my right foot felt like it was on fire. An hour went by and the burning/numbness continued up my right side stopping at my right shoulder blade. Went to the ER and the attending physician told me he thought I had an inflammation of my spinal cord. Sent me to see a neurologist who did a brain and cervical spine MRI. They found a lesion inside my cervical spine at C6-C7. I have found when my muscles in legs and in left hand become fatigued they will become so stiff they "lock-up" and become immobile. I was taking physical therapy at local hospital in February and my muscles became so stiff I could not walk, so they admitted me. I was sent to hospital in Pittsburgh, and was on steroids for 5 days. I was hospitalized 2 more times that year with same issues. Was sent to a rehabilitation hospital the last two times for two weeks, trying to get strength back in my legs and arm. This has been an uphill battle for me, knowing when my body has had too much, and resting myself before the stiffness appears in full force. Have not worked since December 2007. I had my disability hearing last week, I should hear back from them this week. This disease has changed my life so much, I don't even feel like myself anymore. I am trying to focus on what I can do, and not mourn about what I can't do, but sometimes this is difficult. Can anyone tell me their experiences with this, and how do you reinvent yourself?
Cathy

Comment by Donna Hart on February 15, 2010 at 11:37am

It's hard to reinvent yourself. I've had TM for 12 years and spent most of the first one either crying or saying "I want my life back". Eventually I came to realize this is my life now and tried to move on. The biggest thing was knowing when I was too tired,so I could stop and rest. I spent a lot of time in bed because I couldn't get the hang osf stoppin what I was doing in time to mnot exhause myself! And that still happens! But after I gave up wowrking, I found a place to volunteer. That helped organize my time and ,y life. I had someplace to go whene they wanted me. The real good thing though was they didn't care when I was too sick or tired to show up! I still have bad days, still need a wheelchair to get around, and still can't do everything i want. But my life is better for having a goal - some place to go and do something worthwhile.
PS I also go to a water exercise class at the Y. My personal opinion is that water exercise is the best therapy, even if you just walk around the pool hoolding on to the side- that's how I started. Now I can do a water aerobics class (mostly!). Good luck to you. It's really hard. I hope you start to feel better soon.

Comment by Loren Hanson on February 17, 2010 at 8:51pm

Hello. My name Loren and I have had TM since August of 2006. I lost all the feeling in my legs from the waist down. I have recovered enough to be able to walk without a cane, drive and work fulltime. The numbness is still present, most prevelant in my left leg. I am seeing an acupunturist and have had little change, but will continue until I feel that it won't work. I am willing to try most anything to gain more feelingback. I was just told yesterday by my neurologist that my condition is permanent, which was news because I had been led to believe that I would recover more. I am not going to accept her decision, which was delivered by her nurse over the phone. That is one reason I joined the TM network. My wife and I are fortunate to be friends with the Regional Director of the MS Society in Minnesota. She has been most helpful during my hospilization and recovery. She sent the name of a new drug that is supposed to help in remylination(sp) of cells. It is called Ampyra. Has anyone heard of this? If so, is it something we TM'ers could try?

Comment by Gary Wickersheim on February 26, 2010 at 3:26pm

Comment by Gary Wickersheim on February 26, 2010. I came down with TM Aug. 1, 2004 at age 55. Started with tingling fingers. I went to the Family Dr. - had a cold/flu like symptoms all summer. He checked blood pressure, found no signs of heart issues. Then went home home and woke up unable to use right side. went to hospital ER and was put on drug used for stroke patients because right side of body was numb. During the night at the hospital, I tried to get up to use the bathroom, but fell to the floor because both legs were now paralyzed. Quickly began testing and determined it was not a stroke. Numbness continued progressing to mid chest/nipple line. Spinal tap results confirmed TM by the third day and then put on steroids to decrease inflammation and infection in the spinal column. Area affected was C6/7. Moved after one week to rehab facility where daily PT and OT was making some progress on left side. Steroids were being decreased to prevent side effects and then tingling cam back in the fingertips. Then extreme pain in the back and then inflammation took over again in spinal cord and again had complete paralysis chest down and right arm and shoulder. Went back on more powerful steroids which caused an inability to speak or swallow. Then sent to Marshfield Hospital - next ten days were spent going through withdrawal from the meds that caused disastrous side effects. While at Marshfield received OT and PT when I was able to mentally function. Several set backs - pulmonary embolism and pneumonia set in and was in critical care for a time. When those issues were resolved moved to a nursing home, and later transferred again to rehab facility wing in another care facility for about six weeks. Then went to another hospital for therapy and pain management. After six months of hospital/nursing home care, I came home. I was able to feed myself and shave. I was taken to therapy two times per week for a few months until insurance no longer paid because not enough progress was being made. Biggest issue was pain which prevented progress in therapy. Sent to pain management, tried several different meds with no luck. Two years later in 2007 I had an intrathecal pump installed. Had many adjustments to meds in the pump. Since the pump was implanted, meds are dispensed in a more constant manner and go right to the source of the pain. Less stomach discomfort than taking pills. I'm a C6/7 quad. I have an Easy Stand that I use 1 1/2 hours per day. I bought a lift so I can go to the floor to lay flat, roll and do some sitting and stretching, and then get back into the chair. I sleep on a Turn-Q mattress every night. I'm cared for by my loving wife who also typed this personal account.

Comment by Sharla Williams on February 26, 2010 at 5:48pm

Hi Gary and Mrs. W.
What a loving caring wife you have. Living with TM is no fun. The more I read of others and their sufferings the less I feel bad for myself. I can walk with the aid of a walker. I'm hopefully graduating to a quad cane very soon.
You've been through so much. More than most I've read about. I'd never heard of Transverse Myelitis until I was diagnosed Nov 8 2009.
It's definitely a nighmare for us and for our families. I only have my prayers and thoughts to send your way.
God bless you both. I just had to comment so that you knew that someone read your account and cares. My heart goes out to you both. Stay strong. -Sharla W.

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