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Yo bro what’s your instagram????

On May 21st, 2007, my life changed as well. In my case it took 6 months to be properly diagnosed. It's really amazing what a person can adjust to when they have no choice. Botox shots in my bladder every 6 months has been life changing for me. As far as BM, I'm good for about 3/4's of the time. Though it took me awhile to accept and realize once I get the feeling to go, I need to go then, there's no waiting. I've never spoken to other people who also have TM so I like to share that a really deep tissue massage is like a gift from God! It's the only time that almost all my pain goes away. Well, until I fall and everything tightens right back up. But a deep tissue massage every day would be wonderful! I also used to go to the YMCA just to use the Hot Tub and the minute I step in, every single muscle in my body relaxes! Once I climb back out, all my muscles tighten up again.

Thank you. ❤️ On the best days, or in a dream, I’m running up the mountain. Most days, I’m rolling my wheelchair up it. My family keeps asking when I’ll reach the peak. I just keep moving, head up as high as I can hold it. Thank you for sharing. Keep it up. 👏 I needed this today

Hey brother, thank u for sharing your story and stories. I'm in abt month 7 of what TM after being convinced it was stenosis...actally thought it was tumors in spine or brain...anyway, where were u physically at the 2 yr mark? Neurologist said I was luck to have a "mild" case. Im working to get more information. Hopefully you are one of the lucky ones that made a recovery 🙏🏻...if you're watching this I pray for you and that you heal inside and out. God Bless

Dam bro I’m going through the same thing everyday I’m training everyday feel like I’m lose more mobile and strong wake up the next day and I’m back stiff again I’m only 6 weeks post how long was it for u until the little improvement stuck and became permanent? And when did just get to the timeline where it just kept restarting every day Thanks bro appreciate u making these vids

Thank u for sharing brother. Im 6 months in. Got VERY lucky with mine. Shingles virus flare up then immune system went crazy. Im always looking for more info on this as Im sure most that watch this video are as well. Neurologist thought I was done progressing and I pray he's right. Letting the body do what it needs to do, that was well said. Finding a way to be grateful each day. Glad Ive found some youtube channels that address this. So rare. 140 ppl a yr in the states!?

My cousin developed this in '06 very quickly. She was 18. She was totally paralyzed and put on a ventilator on day 1. It took doctors over a month to properly diagnose her. Which means she didn't receive care or medication that might've helped her recover more mobility as she recovered. She could never do more than lift her arms. She passed away from multiple organ failure 2 years ago. She chose not to get lifesaving treatments. Your story and some in this comment section have given me more hope in the medical world. It seems doctors are at least a bit more knowledgeable about this now. I'm here today because I miss my best friend and cousin. She was so kind and I know she would be very happy that most people do get better from this. I pray that you continue to recover and get better and stronger. And same for everyone else that got this horrible disease. 🙏🏻

Hi, I was diagnosed with transverse myelitis 5 years ago. My onset was similar but much quicker than yours. I got out of my chair after watching TV late one nigh with my wife and I noticed a slight inbalance in my walking. I wasn't sure what it was and proceeded to walk about the bedrooom for about an hour getting worse and worse as time went on. I woke my wife up while I was holding onto the walls for balance and when I got to the hospital, my legs gave out. The nurces said I looked like a new born baby deer stumblinf around. The res of my story is similar to yours. I can walk with some pain and weakness. I have a spial stimulator and a pain pump with directed morphine for pain while walking and sitting (especially while sitting).. And now, more than previously, my mental state is dark. Vey dark. I'm hoping someone can write about the mental state to possibly help me....

God bless you, thank you for sharing. Sounds like you are doing well but staying in tune with your body, thank goodness for your wife and family, god speed

Thanks for sharing because this is important info that is not discussed nearly enough!!! My son was diagnosed with MOG Antibody Disease (MOGAD) in 2019. (MOG patients can have transverse myelitis, optic neuritis, ADEM, etc.) He experiences the same issues with body temperature regulation with heat or cold exposure, and when he gets a cold or virus . Also Uhthoff's Phenomenon…It’s likely you experience this too. No one explained Uhthoff's to us in the beginning and it often makes a person feel as though they are having a relapse.

So sad to hear your story, I know 2 others who ended up with this diagnosis after getting the pfneedle , wondering if that could be a possibility since it’s been fairly rare until recently….any thoughts? Just trying to find a common denominator since these people were young and athletic and it came on suddenly, one 3 weeks later and the other 8 months later. 🤔 all the best in your recovery ❤️🙏🏻

Mine started in 2010. listening to you has helped me a lot. feel I gave in to it, which could be why ive not recovered so well. I had lots of hope in the beginning so am hoping things can still improve. good luck on your journey

Do you have an opinion of what may have contributed to your TM?

Waitin diagnosis from neuro i was hospital 8 month im walkin now livin my life halfway) no meds or pt my Lord got me strong im proof

Oh FFS…thanks for turning this into a lecture on religion…not!

Our stories are so close. Brother, I know the pain. I was diagnosed in 2015. I can fully empathize with you. People have no idea. Merry Christmas! Now I am fully recovered. You look to be doing well. Right on. Torture

Hi thank you for your video and i am glad your doing vrry well.. I am 6 months into TM. I cant pass bowel movemts. And bladder issues just dribbiling and sometimes not been able to wee at all.. But my question is do you have frozen and numbe feet and legs? Thank you.. Well done your a great dad also..

You are so good. I have similar issues.

It sounds much like a spinal stroke. I had one in 1992 and it went undiagnosed for almost 30 years.

Thank you so much for sharing. My daughter developed this 4 months ago and has slowly been climbing this mountain. Her faith , her husband and baby, her will, her community and family have be what has cheered and supported her through through this journey. As a mother it is good to hear from you how you feel and all you go throught to try to understand her better day to day. She just turned 30 years old and wants to continue working and growing her family. We are here to support them in any way they need, to love her and to try to understand in our hearts what may be happening in her mind and body each day. Your witness helps me understand. I will add you and your family to my daily prayers. Continue with God as your best friend and He will always provide.

Thank you so much for sharing your journey with us. My younger brother has not officially been diagnosed with TM as they were not able to fully prove based on just symptoms. This video provides us with some insight that we find helpful. Question: Do you 'flare' or have minor relapses when you catch a cold or flu? My younger brother seems to have this when he gets a flu or undergoes severe stress.

Thank you for your honesty! Maybe hard for some to hear, but I’m a realist and like to know what I’m dealing with!

Thank you for your story. I have Kaiser as well, and they are "not impressed" with the "less-than-dramatic" progress of my neural decay. I wish they weren't trying to minimize the cost of appropriate test (beyond an xray). They do NOT live by the "THRIVE" motto. "Every exam came out clean" is what I feel they are trying to focus on. So far, they are giving me only marginal prednisone treatment. If you can help me know what I should be asking them to look for next, please do. My only concern is that they will keep putting me off while new levels of negative symptoms appear for me.

th-cam.com/video/wzXCqgAAXuU/w-d-xo.html

Hi My Name Is Marilyn ay Have TM. What’s merecen Do You drink

I have TM , got me oct last year. I’m similiar in symptoms and outlook

Amén

Amén

thank you, for your valuable input, to continue trusting in God.

This experience mirrors mine so much. Everything from them trying to discharge me (and they did, only for me to come back the next day paralyzed), to trying to transfer gurneys and collapsing, to them struggling to find the diagnosis, test after test coming back clean, headaches from steroids, not feeling the spinal tap, etc. Thanks for sharing your story.

Did u get the full control of bladder and bowel?

Thank you for sharing! 🙏me senti identificada! Yo fui a emergencias 3 veces y me regresaron 2 a casa por que no me creian que estava perdiendo movilidad en mis piernas! Solo me admitieron hasta que ya la paralisis estava subiendo hacia mi pecho y perdi movilidad de mis brazos, mi bladder dejo de funcionar al igual que bowel!! Para mi fue rapido en like 5 days to be paralyzed! Y no habia doctores que supieran que me pasava! Les tomo una semana y media para diagnosticarme! 1 in a millon! Me dijieron! Pero no pude hacer pt por que tenia covid! Good to hear you had a good recovery!! Siempre es bueno escuchar los buenos resultados y hacer conocer esta terrible enfermedad que llega y cambia nuestras vidas! Y que esto pasa a cualquier persona sin inportar historial medico seas chico seas grande! Solo hay que hacer awareness de escuchar el cuerpo and not to wait go to the emergency room immediately!! La recuperacion depende de que tan rapido tengas el tratamiento y el diagnóstico!!👍

Thank you for making these videos. This is exactly what I needed to hear to get me through the month.

In how many months did you first start voiding on your own?

Thanks for another video..... Very informative. God bless you 🙏

Do you still have numbness in your legs or did that go away? Are you able to feel temp on legs?

I'm glad you are back, really motivational👍

I have NMO, and the heat is doing me really bad.

Nothing but love for you my man! It’s a two way street thats how love works. Keep up the great work! You’re killing it.

😇😃👏🙏so glad to see you here again!! Don’t feel guilty!! You went through a process God is working with you and that is awesome!! Looking forward to keep seeing you in this platform!! 👍👍

Did you have urinary retention initially? How long did it take for you to start walking from the day you got TM? Thanks

I am the early recovery from TM, thanks for shairing

This is my experience with it. It began as the worst pain I have ever experienced; worse than breaking any bone, even my back and continues to be, nearly 30 years later. Started in my mid 20’s and a constant, affecting bladder, unexplained anxiety, like I’ve done something terribly wrong but it never comes to you, just what you’ve done; as if you are being punished for an unknowable crime. Had me curled up in bed for two days and when it broke it felt like morphine tapping into a scratch that only it can itch. I eventually had a late diagnosis of MS at age 52 nearly 30 years later. I’ve been disabled and unemployable since I was 34 with frequent attacks. I began as an archaeologist and finished any college related training by giving rock talks at a visitor center near the end of being barely employable. Had a neurologist laugh me out of his office, accusing me of only drug seeking. Chased out by urologist who declared “no 20 something has an issue with peeing.” First clues only revealed later after a spinal tap. Worse medical procedure I’ve ever had. At least most scared given the kind of spinal pain you can experience. Ive had love. That is how I made to this day, only love. Friends can and will desert you as it is not comprehend-able nor relatable. I live by the day. I’ve traveled the world with one foot in front of the other following my kiwi girl. My spinal tap showed that I either had a brain tumor or severe MS. MRI with contrast revealed all the extensive lesions. Please, anyone that is experiencing this for the first time, do not chase your new diagnosis through a web search. It will break your heart and what might lay ahead. You learn to live for the moment, by the day and weight the suffering with love and passion. When I got my first two days of IV steroids, my experience was akin to the expression, “the weight of the world had been lifted.” These neurological conditions are as unique as we are. I didn’t know that it can go hand in hand with MS. You get a few minutes with a doctor, who really isn’t interested in what your experience is. Pain that radiates through my thigh bones and causes severe spasm in back, shutting down your ability to Ora even when your bladder is sending signal after signal. Deification the same . Shuts you down nearly entirely. Pain is universally ignored as it is seen as subjective and worse, it’s just as invisible to strangers or friends, and especially by doctors. Pain can only be seen by the people who truly love you, especially through this past opiate crisis, because of the mere implications of what you describe, and that is unbelievable and politically reviled. You wrestle with the relief that dying will bring at the same time that all you want to do is live.

Did u get back to at least 80 percent

Thank you for sharing. I have had MANY medical tests, dr appointment with Neurologist in an hour.

Hello, my name is Rebecca. Your story inspired me. I was diagnosed with Transverse myelitis in 2018 that lead me paralyzed my half body. I went through a lot of treatment but thank God within 6 months I was able to walk.

Bro I’ve been dealing with this since I was 13 I’m 31 now I have many questions bro do you have a email?

This is honestly one of the best things that has happened to me on my TM journey. While you're better off than me (being able to walk/move without crutches/wheelchair) everything else was so relatable and I really needed to hear this and relate to somebody. I'm gonna pay even more attention to my diet. One thing I guess may be unique to me is bladder pain if I don't drink a lot of water. First thing in the morning and all through the day, otherwise the burning is unbearable.

What kind of sport teraphy you do

Hows your sensation right now? Is it normal on your legs? Im 3 months having TM in the right side of my body.