In this video i will go over the day i got diagnosed with Acute transverse Myelitis. I go into detail on how it happened and what went down during my stay in the hospital.
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.
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. 🙏🏻
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!?
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.
All the symptoms follow the same onset pattern, meaning it has a structure. I believe it is caused by something in our environment that has been artificially added. If all the cases were studied a commonality would be found. A medical detective with funding could solve this. Usually, truth is stranger than fiction.
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
Hello Sir would you tell how did u recovered any special treatment or hospital neurologist??? bcoz my brother has been diagnosed with ATM since 2014 no recovery at all...we are so done please reply
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....
I am heartbroken to hear this. Our bodies failing is one thing but our mental state failing is another. Maybe a reevaluation of your environment and those around you could help change the mindset. For me in my life relationships are everything. Relationship with God, my Spouse, my family and friends. Isolation is dangerous and I even had to say good bye to some bad habits and friends that kept me spirit low. I will be praying for you for sure. Thank you for sharing
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 ❤️🙏🏻
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.
Consider yourself lucky. My son (13 years old) walked into the emergency room with a headache and never left. He was diagnosed with MOG. Your God has nothing to do with your outcome!
I am extremely sorry for the late response. My recovery started with Medical physical therapy, the outpatient PT, then learning how to implement what I learned in a gym environment
As someone who experienced total paralysis from just below the chest to my toes due to a rapid onset of Transverse Myelitis, I can tell you my story did involve the LORD's intervention. The neurologist snickered when my mom told him that God would heal me. He knew the statistics were not in my favor. I don't blame him; he saw cases like mine all the time. I'd likely feel the same way if I were in his position. However, after 3 weeks in that hospital, I was able to walk short distances with a walker. Another 3 weeks of inpatient rehabilitation and I was using a walker for greater distance. Yes, modern medicine like steroids and plasma replacement therapy helped significantly in my initial recovery. I had faith in Christ's healing power and I continued to exercise and put in the work. A couple months later I came back for an assessment: he was amazed and confessed it was a miracle. Bad things happen to decent people all the time, even praying/believing people. Sometimes God reminds us He's there. Physical healing isn't the greatest healing one can receive, but I sure am thankful to be walking and running again.
@@theadaptivefamily Thanks...yes it's a recent fun edition to my life's story. Thanks for the kind sentiment, likewise to you! No disrespect for your faith, I just don't share it, so it was annoying when looking for data and facts!
@@Mexzot Having such a negative and *visceral* reaction to someone speaking about their religion reflects poorly on you, not the religious person. I've done plenty of UA-cam searches on this condition. There are a lot of, "factual," videos on it made by doctors. This obviously isn't that kind of video. I hope you heal, mind and body. 💚
@@WhitneySt0rmy Perhaps, but the reality was I was in considerable pain, looking for information and had to invest quiet a bit of time (about 19mins) before it turned into a lecture on how his faith is what helped him through. I have no issue with his religious beliefs or faith, to each his own! My annoyance, which I feel is justified, was just the time invested before discovering it was only really about faith…if the title had reflected that then I wouldn’t have been annoyed that basically it was a total waste of my time. It’s the same as if someone came to my door, started telling me a story and after 20mins realised it was a sermon I had no interest in, because it became more of a story about how special he is and not sharing information. Personally I feel it’s arrogant to feel others share your beliefs…but hey, you do you! Regardless of the above, I have sympathy for anyone who has this condition, my only suggestion would be the title be changed to “My Transverse Myelitis Journey and how my faith in God helped me”, because as someone who had a very similar journey (slightly worse from a diagnostic perspective), I don’t believe “I was chosen by god to experience this”….it’s just a crap thing that happens to random people!
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.
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
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. 🙏🏻
Thank you so much for sharing your store. I really appreciate it very much. God bless you and your love ones. We keep fighting for those who cannot
Thank you, I'm from Scotland and I was diagnosed with Transverse Myelitis back in December 2020. I'm in recovery right now!
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
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!?
Thank you for sharing and keep it up! God bless you and let me know how I can help
Thank you for sharing your story. Transverse Myelitis attacked my body last October and am on the path to recovery. Praise God for his goodness.
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.
Appreciate the feedback and praying for a great recovery for you
All the symptoms follow the same onset pattern, meaning it has a structure. I believe it is caused by something in our environment that has been artificially added. If all the cases were studied a commonality would be found. A medical detective with funding could solve this. Usually, truth is stranger than fiction.
I’m glad you’re getting better bro. Inspiring story.
I appreciate it
I am the early recovery from TM, thanks for shairing
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
Hlo
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
Hello Sir would you tell how did u recovered any special treatment or hospital neurologist???
bcoz my brother has been diagnosed with ATM since 2014 no recovery at all...we are so done please reply
@@AnuSingh-ks6rg Yes, I can help.
Thank you. What do you mean by recovered? Would like some clarification. Thank you
@@PaulBMiller Sir actually we are in India
Please let us know the hospital, any special neurologist for consultation.
thank you, for your valuable input, to continue trusting in God.
Thank you and God bless you
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....
I am heartbroken to hear this. Our bodies failing is one thing but our mental state failing is another. Maybe a reevaluation of your environment and those around you could help change the mindset. For me in my life relationships are everything. Relationship with God, my Spouse, my family and friends. Isolation is dangerous and I even had to say good bye to some bad habits and friends that kept me spirit low. I will be praying for you for sure. Thank you for sharing
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 ❤️🙏🏻
It is known that it is a side effect of that treatment. Its obviously not publicized
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.
So they haven't diagnosed you yet?
@@theadaptivefamily no, they haven’t.
Consider yourself lucky. My son (13 years old) walked into the emergency room with a headache and never left. He was diagnosed with MOG. Your God has nothing to do with your outcome!
Thank you for sharing. I have had MANY medical tests, dr appointment with Neurologist in an hour.
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
Inspiringly story because I am suffering now TM
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
So what was your recovery process like?
I am extremely sorry for the late response. My recovery started with Medical physical therapy, the outpatient PT, then learning how to implement what I learned in a gym environment
My mother is transverse mylities patient two years plz give me some advice what I do
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
It sounds much like a spinal stroke. I had one in 1992 and it went undiagnosed for almost 30 years.
Sorry to hear that
I am 13 years old.i fall in transverse myelitis in 4 months ago. Now I walk not properly
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
Hlo can you help me
My son was 13 years old. He lost his life MOG. I hope you're doing OK
How many days you got recovery
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
I am surfing transverse myelitis but urine problem please help me
What exercises did you do to strengthen your core?
@@sanyamehta6992 hallo
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
I need your help. Can I call or text you?
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
ua-cam.com/video/UMcQjs9JWnI/v-deo.html
Oh FFS…thanks for turning this into a lecture on religion…not!
As someone who experienced total paralysis from just below the chest to my toes due to a rapid onset of Transverse Myelitis, I can tell you my story did involve the LORD's intervention. The neurologist snickered when my mom told him that God would heal me. He knew the statistics were not in my favor. I don't blame him; he saw cases like mine all the time. I'd likely feel the same way if I were in his position. However, after 3 weeks in that hospital, I was able to walk short distances with a walker. Another 3 weeks of inpatient rehabilitation and I was using a walker for greater distance. Yes, modern medicine like steroids and plasma replacement therapy helped significantly in my initial recovery. I had faith in Christ's healing power and I continued to exercise and put in the work. A couple months later I came back for an assessment: he was amazed and confessed it was a miracle. Bad things happen to decent people all the time, even praying/believing people. Sometimes God reminds us He's there. Physical healing isn't the greatest healing one can receive, but I sure am thankful to be walking and running again.
Assuming you listened because you or someone else has Transverse Myelitis. Hoping for the best in that recovery
@@theadaptivefamily Thanks...yes it's a recent fun edition to my life's story.
Thanks for the kind sentiment, likewise to you!
No disrespect for your faith, I just don't share it, so it was annoying when looking for data and facts!
@@Mexzot Having such a negative and *visceral* reaction to someone speaking about their religion reflects poorly on you, not the religious person. I've done plenty of UA-cam searches on this condition. There are a lot of, "factual," videos on it made by doctors. This obviously isn't that kind of video. I hope you heal, mind and body. 💚
@@WhitneySt0rmy Perhaps, but the reality was I was in considerable pain, looking for information and had to invest quiet a bit of time (about 19mins) before it turned into a lecture on how his faith is what helped him through.
I have no issue with his religious beliefs or faith, to each his own! My annoyance, which I feel is justified, was just the time invested before discovering it was only really about faith…if the title had reflected that then I wouldn’t have been annoyed that basically it was a total waste of my time.
It’s the same as if someone came to my door, started telling me a story and after 20mins realised it was a sermon I had no interest in, because it became more of a story about how special he is and not sharing information.
Personally I feel it’s arrogant to feel others share your beliefs…but hey, you do you!
Regardless of the above, I have sympathy for anyone who has this condition, my only suggestion would be the title be changed to “My Transverse Myelitis Journey and how my faith in God helped me”, because as someone who had a very similar journey (slightly worse from a diagnostic perspective),
I don’t believe “I was chosen by god to experience this”….it’s just a crap thing that happens to random people!