Transverse Myelitis, my Journey.

[MrJoesouth]

I had TM and feel fortunate to have recovered apparently well but was left with urological nuisasance, but for the pain maybe you could try Mariguana, I live in a Mexico so to have been diagnosed quick was miraculus but when the damage is done well only your body knows, thanks for your story

[cherilovinherlife]

i took me 2 years to get my diagnose,i cannot bend my toes on my left foot,or feel my foot,most of my leg i can't feel.my right leg is week and,have bladder issues, the pain was enough i thought about suicide,now im on a series of pills and fentynal patch,im 47, i just started reading everything aand anything i can. one dr.said"you'll never run after your grandkids". gee thanks asshole,i know your pain, i was in the hospital a month , your in my prayers

[osurocks10]

Hello Sir, Thanks for this video blog. I admire your courage to have lived with TM for 20 odd years. One of my close family member has been diagnosed with TM.He is paralyzed chest down.We do not know if he'll be able to walk ever.Please let us know if you've seen Dr.Kerr from John Hopkins. Would like to know more about the treatment JH has to offer.

[davidlaw28]

I developed sensory TM in 2003. I recovered in 2007! I was lucky!

[7Nubi]

Thank you for sharing. My cousin was just diagnosed. 

[photo2010]

@7Nubi You're welcome. Best wishes to your cousin for recovery.

[jeremylm87]

i have TM also i was diagnosed when i was 14 from my neck down, now i compete in Jiujitsu competitions look at my videos (jeremy Montalvo) i started wrestling when i was 17 i have poor balance and cant feel my right foot keep ur head up

[pedropratez]

I'm from Portugal and about 2 years ago i have TM too.thankfully i'm fully recovered now.

do you now there are cases of recurrense of TM?

WISH YOU BEST

[antiquesman2606]

how do you manage with mobility?..i have TM..i want a mobility scooter but alas it will be a whie yet.

[photo2010]

I did get a powerchair but haven't used it much. I am too fatigued from TM to do anything lately.

[antiquesman2606]

sorry your fatigued..i get it also but people don't really get it..i think alot of the time people think its laziness.

[antiquesman2606]

do you still drive ? have you got a mobility scooter ?

[photo2010]

@antiquesman2606 Can't drive right now. yes I have two powerchairs. One for indoors, one to go out.

[soxpride45d]

hello i also have tm but i have only had it for 1 year and i can walk and run but i get incontince which makes my life harder as a teen because i cant have as much fun as all the others i cant be in sports because of it and I have seen many doctors i mostly like Dr. Kerr at John hopkins and he says i should use cathaders all the time to empty my bladder and i just hope they make a cure for this because i dont want this the rest of my life and i feel sorry for others with tm but good luck to u.

[1CLaW]

Part 2- I was also diagnosed with MS. It took me 1 year to lose the numbness except that it stayed in my hands and parts of my legs. I tried injecting Beta Interferon for months but it only made me very ill and depression became more severe. Then I started Effexor-XR SNRI anti depressants and they helped with the pain and stifness. Then I gave up Beta Interferon and started LDN(Low Does Naltrexone). Ever since I have returned to about 80%. I have hardly any pain, loads of energy and I can run.

[1CLaW]

Thank you for your story. I had an attack of TM 2 years ago after a flu. Over a period of weeks I went numb from my feet up both legs, completely though the groin, then the abdomen and up to my neck. Then it spread down my arms and into my hands. The pain was unbearable. I am a musician and it crippled me from playing my instrument so much I could no longer hold a guitar let alone finger a chord or pluck a string. My hands then went spastic and I could not use a mouse or right click.

[alarm1ngt0thesenses]

this shit it brutal. i got it in 2008. i had awful pain one night, i took a shit lot of pills, and the next morning i couldnt walk. i was in the hospital for about a week. i walked out under my own power and to this day, the only side effects i still have is i cannot feel temperature or pain on one half of my body. i was only 13 years old at the time, and it was scary as hell. but im so thankful i made it through and made a virtually complete recovery.

[epatton18]

I had the pleasure of doing some nursing volunteer work for my school and was able to take 4 kids that have TM fishing. It was a wonderful and eye opening experience. Thanks for the video... Stay strong and i will pray for Dr. Kerr at John Hopkins to come up with a cure soon

[turnnineteen69]

i can't live with Myelitis...my life also is wrecked ..i feel like i'm in a living hell..i have had it about 13 yrs and i'm in constant chronic pain and numb at the same time..i feel like i'm slowly getting worse...the pain and the sensation loss are progressing..i don't know how to cope.

Ste

[phantas007]

Thank you for these videos everyone. I was diagnosed with TM in February 1992. I didn't realize how fortunate I was until about 2 years ago when I started doing research on TM. I am able to walk and run slowly. Learning to walk again was the hardest thing I've ever done. My knees and ankles are very bad from losing my balance and falling many, many times. I am in pain everyday, but I take no medication. I would love to talk to people about more personal problems from this.

[ralphieguitar64]

I watch all these videos on TM and i think of the attack that i had and i was mad about my lack of leg movement but i can walk and run, not as fast or graceful as I use to and i see all these people on here that didn't recover at all or are bound to devices like walkers or canes. I guess i should be a little more grateful. Good luck you guys!

[drsunilg70]

Hi, thanks for sharing such valuable information,my friend who is 35 now recently got diagnosed with TM and on steroids and physiotherapy. Ur words are inspiring

[WildkatPublishing]

Hi I had TM on Oct. 4, 2004. I'm a c6 complete quad now. You explained it very well.

[Sefardisafran]

I have Progressive Multiple Sclerosis and recently wa found to ha Partial Lateral Sclerosis (PLS)any neuromuscular conditions are unpleasant and in a great majority needs to use wheelchairs and other forms of transportation.

Be better in this year

Sefardisafran

Hoboken NJ

[ThatDudeNC]

Hey. Thanks again for getting the word out about TM. I have had TM since I was 13, in 2000! I was told I am a "lucky" one too.... I am in college and can walk with a cane.

[photo2010]

Thank you for watching it! :)

[tamuflip]

My brother is 17 and he is currently recovering and also managed to move around the house freely. He plays competitive tennis upper level. He is very upset but according to the doctor he should be ready to go and will be in full recovery after 2 weeks. It's scares the heck out of us to have him be that competitive again. But it breaks his heart to just sit and watch his passion in life fade. We know how it feels and wonder if there is any support group around. Thanks

[tcmiller73]

I was diagnosised back in April 2008 with Transversemyelitis. My entire life has turned upside down. I can walk some days and other I can't. My speech is affected on somedays. I just want to scream. I now have an electric wheelchair. I have lost all my personal freedom at 35. I am glad I have a diagnosis and a great doctor who seems to manage my pain well, but without warning I have these trimmers that can be legs only or entire body.Would love to talk with anyone who could help. Carla M.

[photo2010]

Carla, I was hit with TM in my 30's also. It took me 7 years to get a diagnosis. Did you have steroid treatment? It's only useful early on and it was too late for me. At least you are getting your pain managed, I am not. You are also young enough so aome therapies may come along in your lifetime. I hope so.

[tcmiller73]

I am greatful. I had steroid treatment early on, but it has but on 40 lbs. That is not exceptable. I am so glad to talk to someone.  I feel so alone. There is not much out there about this disease. Would love to hear more. What helps you with the pain. Cymbalta was helping me but they had to stop it a few days ago. It affected my memory severly!! Now pain is unbarable. God Bless you in your quest to help others.

[photo2010]

I have tried Cymbalta and other similar medications. I could not handle the side effects.  i take Xanax to help me sleep, but it's not doing much anymore. i also take Tylenol to take the edge off a little. My doctors won't give me anything for pain, I don't understand why.

[hayleejayne14]

I have had TM for 22 years since I was 15, I suppose I am lucky, I walk with a stick, I am often Tired, I can drive, good health to you all

[CorvusRedcrow]

I am one of the VERY lucky TM suffers. from being numb from the chest down and only able to walk with help, I am now 99% back to normal.

[obizyanka1]

i'm lucky too, i had this disease 4 years ago, and thanks God im healthy now. My doctor gave me prednisolon(gormones)6 peels 3 times a day almost 2 months, its was horrible part of my life. I wish you best, be healthy.God bless you

[rcner]

to photo2010 and the rest of the world . I have been dealing with the after affects of transverse myelitis for nearly 30 years. if anyone would like to talk and share thought email me thanks

[amberjthomas]

How are you? I have had TM since 10-31-06. I am having a difficult time with this. For the most part, I stay upbeat, but I'm still trying to be happy IF this is the end of my recovery. I just want to know how you have carried on for so long.

[tmmylopez]

ANy cure for this? I have this too. One day I went to sleep, the other day I couldnt walk anymore. I cant hold my pee, my poop have sex, anything. This is the devil in a disease.

[photo2010]

Dr. Kerr at Johns Hopkins is working on a cure. Keep hoping, i am.

[rcner]

hello everyone I have been dealing with the after afects of transverse myelitis for many years/I would like to talk to any others who have problems from the disease. struggles can be tough

[rcner]

I have been dealing with the after affects of tm for many years if anyone wants to talk email me/respond back

[jamyshah]

yes

[jamyshah]

yes i have problems too

[Sefardisafran]

Thanks for such a practical way of describing TM.

I have progressive MS.

LuisM Méndes

Hoboken NJ

[fbpreviatti]

im 25 years old and  i had TM march 2007, i experienced horrible pain,sensory disorder, on both legs,tingling, burning pain,painfull spasms on my legs ,feet and back. tremors,spach disorder muscle weakness went throught the most horrivel time of my life.i ws so scared never knew waht caused te spinal shock, depression and suicide is the first thing thacame to my mind since i knew that TM can lead you to never walk again.

[sisrobbye]

yeah it's true...but sometimes it's hard anyway..

[photo2010]

Agree.

[sisrobbye]

i have a myelitis from 7 years....now i'm 21 years old.....i walk with a cane because it's to hard to walk normally.robbye

[photo2010]

My doctor said we're the lucky ones, the "walking wounded", though I am now using a walker and a wheelchair also.

[sisrobbye]

yes this is true...it'a little hard sometimes

[susanmarie70]

Nice to see you have posted this here too! :-)

[photo2010]

Thanks Susan. :) When I watch it now, I think maybe I should have added some music or something.

[susanmarie70]

I think you can do that directly on YouTube? If you go to "testube" at the bottom of the page.

[photo2010]

Thank you for the idea. I checked out testtube and it looks like it will replace the existing soundtrack. Would that erase the blog?

[susanmarie70]

hmm maybe thats not the right link.. i know there is something here where you can add music, or replace your music.

Ive just looked, and you need to go to "edit video" and click remixer, but the audio bit isnt available yet.