Recovery Stories!

Comment by Cammy Harper on October 31, 2008 at 6:48pm

After 2 1/2 years I have a lot of more good days than bad.. when this hit me I was down in about 6 hours nothing from the chest down, I now walk, without any help. What is huge is I can again care for myself, oh how it takes all your pride when you have to help with just getting by. I was told I would be what I was by two years, and Yes I pretty much am,, but I also have HOPE that God can and will keep healing me one little thing at a time. Meds help with the things I as a human can not handle like the bladder/bowel stuff and the pain in my back. But everyday I thank God he spared my life for his service in whatever time I am still here. Cammy

Comment by ginger on November 15, 2008 at 11:10pm

My 5 yr anniv with TM is next month--I was struck with it in Dec of '03. I fell about 7:30am and was unable to use my legs or empty my bladder my 8:30am. I had been having trouble with my legs and back pain but I thought it was a pinched nerve and would go away. Even going in an ambulance to the ER wasn't scary becuz I really thought I would just get a shot and be sent home. WOW was I wrong!! A few months later, in Feb. of '04 a Dr at the OU Med. ctr told me "Well I'm sure you've already been told that you will never walk again" I was floored!!! No one had said that!! They had beat around the bush about it but I wasn't listening cuz it wasn't what I wanted to hear. I am happy to say that I can walk a little bit esp with a walker and I use a manual wheelchair for larger distances (like shopping). I have learned soooo much about myself and who I am and about what is truly important in life and what is NOT. I am sooo thankful for the little things that make up the great moments that are the real reasons for living. I am thankful everyday for the progress I've made physically and for the emotional growth too. I can honestly say I am thankful for the ability to be able to stand to brush my teeth and that I no longer take these things for granted. I am richly Blessed. My license plate on my car says Eph 2 ten . Plz look up that scripture and know that God loves each of us and has a plan for our lives. If we don't walk again here...it's OK we'll walk and FLY in heaven!!! Walking is way over rated anyway....from what I can remember before I had to hold on to the walker and grab bars,etc. LOL. Sometimes I do wish I could stand on my tippy toes to reach stuff but I just get something and knock the stuff down and catch it quick before it hits the ground---I either learn to be fast or I have a mess to clean up. I'm a lot faster now than a couple of years back. LOL.
I do look forward to being friends with you all and communicating with ya'll more.
Your friend,
Ginger

Comment by Ankit jeenwal on November 16, 2008 at 1:27pm

may 11, 2004 was really a horreble day for me. with in a 4-5 hour i was on wheelchair. after a MRI Dr told me u never walk again. but i m happy 2 say i can walk like a normal person. nobody can recognise i hv tm. still i hv urinary bladder problem. m using cathter 2 pass urine. and i cant controll urine so m using adult diapers also. i hope i 'll get 100% improvement. let see. i m just 21 year old young boy. i did electronics engineering. and my colz life was a wonderfull experince . bcoz my classmates think i m normal person they dont knw abt my actual position. its realy a very tough for me to complete engg. without showing my disability. now i work as a production engg. in a cfl lamp company. my english is not good. .but i hope u all understand my feelings.

Comment by Peter on November 18, 2008 at 12:49am

Back on 10/17/06 I dropped off my healthy 11 year boy at school. I got a call from the school 2 hours later saying that I needed to come in and that EMS rescue were on their way because my son was crying that he couldn't feel his legs. My son said that when he felt the first pain in his back it took 10 minutes for him to go completely numb from the torso down. After 2 years of PT and OT my son is now walking with a cane. He still has no control of his bladder or bowels. We have all the faith that he will fully recover.

Comment by Prasad on November 18, 2008 at 9:00am

Hi, Myself Prasad aged 27 had diagnosed for TM on last year (May-07). Initially i had headache followed by fever. It took a week time to loose my control over legs, bladder & completely collapsed on 8th day. I was unable to stand on my leg, urine & stool got blocked, not able to sit, lost sensation at below chest with lots of pain & had blurred vision. After diagnosis, I had Acute Transverse Myelitis. I have been on Steroid for couple of days & slowly started to gain sensation & able get some movements in leg. I had on indwelled catheter for 2 moths. After that, Dr removed the indwelled catheter & tought me to do CIC (clean intermittent catheter), enema & was on physiotherapy. After 5 months i have joined back to work. Now after more than one year I can able to walk properly, able to do jogging (but cant run fast), have complete sensation. As of now I had good recovery, but still I have following problems.
1. Urge to pass urine,
2. Difficult to pass stool,
3. ED
Right now i'm not on CIC & able to void urine naturally. Max urine i can hold is 279 ml with residue of 68 ml. I have been on Tolterodin Tetrate & Imipramine for bladder control. But if i have been on medicine, I need to do CIC as i cant pass urine naturally. If not, i will have urgency which sometime results in leak. But now able to hold urine at-least for 5 to 10 min (during urge) within that I can reach nearest bathroom. I'm not aware why I have different feeling of urge at each time. Sometime its manageable, sometime i can't (Worst during UTI). Even during urge if I pinch at the tip of penis, it add up some more time to hold. Whenever I have to go for long travel, i press above the bladder and/or rub below tip of penis which initiate release of urine. Is anybody experiences the same?.

I'm doing Kegel exercise for bowel & bladder which helped me to increase muscle power.

I had gone penile doppler which reveals that i don't have Erectile Dysfunction, but still i can't able to have complete erection. As still i'm single I don't have any problem, but need to overcome this too.

Comment by Kevin Weilacher on November 20, 2008 at 3:25pm

I'm adding this story for our member Lisa Mann. I had asked her if she would allow us to add it and she recently wrote back and said yes. Lisa has been very busy lately, that is why she has not been able to add the story herself.
I wanted to post this because it is an article out of a newspaper in the U.K. about Lisa and her story.

Lisa Mann's story.pdf

Comment by Ashley on December 2, 2008 at 8:49pm

I live in a small town in Iowa, and went to California this summer with my dad and little brother. It was my first time on an airplane, first time seeing the mountains, and first time seeing the Pacific Ocean. We were staying with my dad's friends, and we arrived late Saturday night. Sunday, we went to the beach, and I felt completely normal all day. That night I took a shower, and when I got out, my arms felt heavy. By the time I went to bed, I couldn't move my arms or hands. I woke up in the morning unable to sit up or move much of my body at all. My dad carried me to the car after I fell several times, and we headed to the hospital. I had an MRI, was diagnosed with TM, and started treatment all within 12 hours. The neurologist said there was no guarantee I would ever walk again, and we should begin preparing for wheel chair accommadations at home. I started moving my hands two days later and began walking with a walker. This happened at the end of July, and today I am close to back to normal. This was supposed to be my freshman year of college, and I had to push that off. However, I am definitely one of the lucky ones. I can walk and run short distances. I only had therapy for 3 months, and in January I will start classes. I also still have some bladder issues, but they are getting better. I can now control it for the most part. I hope that doctors become more familiar with this, so more people can start recovering faster, Thank you all for being my inspiration when I wanted to give up.

Comment by Joy williams on December 3, 2008 at 1:11am

sorry , but i don't think so. i had this start in 2003-4 and i should be cathing myself a few time a day not a few a week like i do. They tell me things should get a lot better after the surgery . I i have it.......I am just afaid of waking up tiied down with a tube in my throat. I am claustiphobic . and I just saw my hubby and son go thru that so much i go to nervouse about it. I had a terrible time getting my family doctor a rheumy to sign for a referal or a mri my nero surgejonj wanted down before he saw me......you know a mri becaluise i said i was hurting bad again.......no he just toooooo afraid fo thje big shots that judge doctors ???? i guess..................any way i just go mad and started asking my othjer doctors.....the first one i went to was my nerologist and he set me up for a myleogram. good except they had hard time geting it t go passed my t5/6 spot so they did they whole thing thru twjo times I was there from 11 am, ro 7pm my blood work i had done and redone showed many nuimbers way off...........my uric acid was good and hjigh again and i do not eat much meat in fact i am on metamex =B12 ect. so it explains to me why my hand and finger joints pain so bad all the time besides the tedenitjis and carpal tunnel well i am going on and on again by for now joy

Comment by Shirley Gurnell on January 26, 2009 at 5:43pm

Hello everybody, I live in Hamilton, NZ, and although I'm a nurse of many years standing, I had never heard of Transverse Myelitis. I was 53, and had a bad year (2003). I did a long haul to London in March to attend my son's wedding. My daughter and sister and I coughed our way around the UK for the next 3 weeks. On our return, in the April I had the flu vax (big mistake). In June I developed a sinus infection which with 4 lots of antibiotics, couldn't shift. On the 25th July at 1am I got up to go to the loo (very unusual) and my legs collapsed underneath me. The previous 3 days to the collapse I felt as tho I had a dose of influenza, really ill. I couldn't work. My gait had deterioated, and we were in the process of selling my son's house here. I was home alone at the time and called the ambulance. In the ER I had been diagnosed in 5hrs, my 1st dose of IV methyl-pred was administered by 9am, I had a further 4 doses. I was in hospital for 8 days and a dx of Idiopathic TM was given. My MRI showed lesions from C5-T2 with spots in the brain, (which have turned out to be plague), not MS. I have recovered 90%, my main residuals are fatigue, cognitive, and some bowel and bladder issues. I suffer from more tingling in the hands and feets than usual, and nerve pain on my back. I still work 3 days a week, but it is so tiring, I don't know how much more I can do that. Thanks for listening.

Comment by camille on February 2, 2009 at 2:18pm

Hi everyone. Here is my story:
The onset of Tm was sudden in my case. I was making coffee before heading out to work on the morning of November 6, 2007. I felt this incredible pain across my torso that just got worse by the second. My husband called EMS and off I went to the hospital. From that point on I do not recall much, I guess I passed out. Next thing I know as was in intensive care. My lesions are at TC and 7.
Today I can walk without assistance but not very well. My balance is awful. I lost the use of my right hand ( and of course I am - was - right-handed) and I have serious bladder issues. I also fatigue easily but that is getting a little better (the south Texas heat and humidity don't help). BUT, I am determined to beat this. I completed 3 online courses while recovering from TM, right after leaving the hospital. I also took a major exam (lots of typing! I use a devise over my right hand that helps) to complete my degree in library science. I passed! Now on to further recovery in order to get a job!
I wish everyone here and their family the best!

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