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Пікірлер
@saetwasaitoti9159 14 күн бұрын
My daughter is going through this and no doctor has diagonised her, they are saying it's psychological and am sure its not. Its frustrating
@jamess.1140 25 күн бұрын
I been dealing/diagnosed with Transverse Myelitis for a few months now. I am thankful I found your encouraging videos and look forward to watching them all!🙏✌️
@Sedalia82 27 күн бұрын
Brand new to TM diagnosed in November. Your videos are very informative and helpful. Thank you!
@kabirnagori1416 Ай бұрын
Hey after getting control over bowel in how many days you get control over bladder
@behumand9612 Ай бұрын
my btother is today in a hospital with all the known symptoms. He can't walk or stand up can barely speak. he relapsed again after being released from hptl about 3 weeks ago. he is on steroids and iv IG (immunotherapy). they found an infection and been vomitting w/ tomach pain. he also had an CNS infection the last time it happened to him too. After I did some research, found out this TM, GBS, AIPD can be caused by microbial infections ( bacterial, viral, and fungal). I told my brother to ask his doctor to prescribe for him an antibiotic or something for cure the infection when they occur but he didn't doit. knowing that it's after the infection that the immune system goes over drive in storming the spinal nerve which frequently precede the onset of TM. you can find this on pubmed. Molecular mimicry has long been thought to play a primary role in triggering TM, being C. jejuni one of the most important agents involved in this mechanism. my brother doesn't listen to me unfortunately when I tell him to watch stress and ude natural things that will help him rid of these infections . im not a doctor please do your research. and may the lord cure all ill person
@musthyalapraneethkumar-t6s Ай бұрын
I was diagnosed with acute transverse myelitis in spine April '2022 and took some steroids & medication as a process of treatment in initial to get recover and it's been 3 years i am suffering with and still have urine urgency/leakage, constipation, leg weakness, some sense issues. Requesting someone help who got recovered completely with this case. Please help me & guide me how to overcome this complexities and is there any chances to reduce the diagnosis. Plz
@behumand9612 Ай бұрын
I wrote something in the comments today. my brother experience with this disease. infections triggers it. my brother had it after he started getting vaccins shots starting with flu vaccin, then he recovered then started covid shot, then he relpsed again and not because of steroids and his immune system compromised he gets infection . each time he gets infection the TM symptoms follow m, imbalance, numbness in legs, vomitting, speach slured, cant walk etc.. my point is try to find something to fight those infections when they occur. possibly this may help. because the immune system start attacking the spinal corde nerves This neurological disorder often damages the insulating material covering nerve cell fibers (myelin). i would ask doc if niclosamid is good for you. Niclosamide beyond an antihelminth drugg search this in Pumed website. im not a doctor nor a nurse or medical guy. im just anybody trying to help
@michaelorsini9695 Ай бұрын
I've had it for past 5 months. I can walk with a walker and for short distances without a walker. But I still have a lot of pain in my hands, arms, elbows, feet. Still have urinary problems peeing all the time and constipation as well. I try to stay active...hope this eventually gets better...we'll see...
@shahidhussainranjhani1642 2 ай бұрын
I wants to know about your medical treatment?
@pearlpandey859 5 ай бұрын
Anybody who recovered from Tm in india i am searching for hospital
@agiusproductions5092 5 ай бұрын
Hey bro have you tried stem cells or considering it if so has it helped I’m 22 dealing with pretty similar situation
@madhavmahatma7113 6 ай бұрын
Thanks for sharing your experience
@Theworkingmantv 7 ай бұрын
Yo bro what’s your instagram????
@adalinerose7451 7 ай бұрын
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.
@darrellmckelvie 7 ай бұрын
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
@shahidhussainranjhani1642 2 ай бұрын
I want to contact with you plz i need iam suffering from Transverse myelitis
@djelliott4524 8 ай бұрын
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
@agiusproductions5092 8 ай бұрын
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
@theadaptivefamily 7 ай бұрын
I’m sorry to hear that but glad to hear you’re hitting the training. In regards to stiffness it’s gotten better as I learned to recover better but I’m stiff every morning, after every nap, or after sitting long durations. But a combo of tracing and recovery helps minimize the time it take for the stiffness to go away once I’m up. Hope that makes sense
@agiusproductions5092 7 ай бұрын
Yeah brother it’s so frustrating I have lost sense of soft touch as well from the chest down pins and needles in my legs aswell and strength in my right hand and left hip left calf other then training is there anything else you reckon I should try so that can help me and when do you think your recovery stopped and became stabilised and sore no more permanent improvement thanks for responding appreciate it
@djelliott4524 8 ай бұрын
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!?
@theadaptivefamily 7 ай бұрын
Thank you for sharing and keep it up! God bless you and let me know how I can help
@WhitneySt0rmy 9 ай бұрын
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. 🙏🏻
@theadaptivefamily 7 ай бұрын
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
@thomasgflynn 10 ай бұрын
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....
@theadaptivefamily 9 ай бұрын
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
@behumand9612 Ай бұрын
praying that you get better. don't give up.
@russellfisher3103 11 ай бұрын
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
@theadaptivefamily 9 ай бұрын
Thank you so much
@sharrison8155 11 ай бұрын
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.
@theadaptivefamily 9 ай бұрын
I have never heard of Uhthoffs before. I am going to have to take a look into it. Thank you
@karynd2368 11 ай бұрын
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 ❤️🙏🏻
@theadaptivefamily 9 ай бұрын
It is known that it is a side effect of that treatment. Its obviously not publicized
@bridiellewellyn8469 11 ай бұрын
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
@theadaptivefamily 9 ай бұрын
Thank you and I hope you can recover more fully
@humpdaddy6191 Жыл бұрын
Do you have an opinion of what may have contributed to your TM?
@theadaptivefamily 9 ай бұрын
A dormant gene from a Vaccine I took in 2009 but that’s just a guess
@valeriealv7503 Жыл бұрын
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
@theadaptivefamily 9 ай бұрын
Praise God
@Mexzot Жыл бұрын
Oh FFS…thanks for turning this into a lecture on religion…not!
@687christian Жыл бұрын
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 9 ай бұрын
Assuming you listened because you or someone else has Transverse Myelitis. Hoping for the best in that recovery
@Mexzot 9 ай бұрын
@@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!
@WhitneySt0rmy 9 ай бұрын
@@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 KZbin 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. 💚
@Mexzot 9 ай бұрын
@@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!
@uncivilizedrebirth Жыл бұрын
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
@AnuSingh-ks6rg 9 ай бұрын
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
@uncivilizedrebirth 9 ай бұрын
@@AnuSingh-ks6rg Yes, I can help.
@theadaptivefamily 9 ай бұрын
Thank you. What do you mean by recovered? Would like some clarification. Thank you
@AnuSingh-ks6rg 9 ай бұрын
@@uncivilizedrebirth Sir actually we are in India Please let us know the hospital, any special neurologist for consultation.
@pearlpandey859 5 ай бұрын
@@AnuSingh-ks6rgdid you got the hospital let me tell also plz
@davidclancy3885 Жыл бұрын
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..
@theadaptivefamily 9 ай бұрын
Thank you. Have your tired strengthening you core like pelvic floor exercises? That helped and continues to help me with bowel and bladder. In regards to frozen feet it comes and goes. It mainly my right foot that feels frozen some times
@jannaolsen3557 Жыл бұрын
You are so good. I have similar issues.
@theadaptivefamily 9 ай бұрын
Thank you. Hope you get better soon
@annewhite9351 Жыл бұрын
It sounds much like a spinal stroke. I had one in 1992 and it went undiagnosed for almost 30 years.
@theadaptivefamily 9 ай бұрын
Sorry to hear that
@86diggler 5 ай бұрын
How did you end up getting a diagnosis of spinal stroke after such a long period of time?
@martaarroyo-ross1013 Жыл бұрын
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.
@theadaptivefamily 9 ай бұрын
Thank you so much. That’s very encouraging to hear
@theadaptivefamily 9 ай бұрын
God bless you as well
@1000sk8tr Жыл бұрын
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.
@theadaptivefamily 9 ай бұрын
Thank you for your comment. Yes I do have flare up when I get sick. It’s pretty painful and scary
@brendabarge9883 Жыл бұрын
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!
@theadaptivefamily Жыл бұрын
Thank you, and I'm sorry to hear you have it as well
@agilechange722 Жыл бұрын
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.
@theadaptivefamily Жыл бұрын
So they haven't diagnosed you yet?
@westondoesit6127 Жыл бұрын
@@theadaptivefamily no, they haven’t.
@humpdaddy6191 Жыл бұрын
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!
@MrGuys-gl7zb Жыл бұрын
kzbin.info/www/bejne/rau7dKSddqaLq7c
@marilynquintana8540 Жыл бұрын
Hi My Name Is Marilyn ay Have TM. What’s merecen Do You drink
@theadaptivefamily Жыл бұрын
Are you asking what medicine do I drink?
@scarboroughrider Жыл бұрын
I have TM , got me oct last year. I’m similiar in symptoms and outlook
@theadaptivefamily Жыл бұрын
I’m sorry to hear that. I’m praying you are having a good recovery
@marilynquintana8540 Жыл бұрын
Amén
@theadaptivefamily Жыл бұрын
Thank you
@marilynquintana8540 Жыл бұрын
Amén
@theadaptivefamily Жыл бұрын
Thank you
@valerychaves1011 Жыл бұрын
thank you, for your valuable input, to continue trusting in God.
@theadaptivefamily Жыл бұрын
Thank you and God bless you
@rayforceaddict Жыл бұрын
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.
@theadaptivefamily Жыл бұрын
Appreciate the feedback and praying for a great recovery for you
@uncivilizedrebirth 9 ай бұрын
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.
@arshad3588 2 жыл бұрын
Did u get the full control of bladder and bowel?
@theadaptivefamily 2 жыл бұрын
I do not have full control. But it is manageable
@ls081082 2 жыл бұрын
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!!👍
@theadaptivefamily 2 жыл бұрын
Thank you for sharing
@KaranSingh-io6ds 2 жыл бұрын
Thank you for making these videos. This is exactly what I needed to hear to get me through the month.
@theadaptivefamily 2 жыл бұрын
Thank you for the encouragement and motivation to do create them. I'm blessed to see them do so good work in people
@shahidhussainranjhani1642 2 ай бұрын
Hello can i contact with you? Iam shahid from Pakistan so iam suffering From Transverse myelitis
@KaranSingh-io6ds 2 жыл бұрын
In how many months did you first start voiding on your own?
@theadaptivefamily 2 жыл бұрын
Do you mean whern I fully stopped using the catheter or the first time i was a le to void without a catheter?
@KaranSingh-io6ds 2 жыл бұрын
@@theadaptivefamily the first time you were able to void without cathing. I’m 1 1/2 months out and I was fine and can even jog a little but I still have complete urinary retention and anejaculation.
@theadaptivefamily 2 жыл бұрын
I would say two months after. Yet technically I don't fully void till this day
@shaniqueedwards6476 2 жыл бұрын
Thanks for another video..... Very informative. God bless you 🙏
@theadaptivefamily 2 жыл бұрын
Thank you. I appreciate you
@KaranSingh-io6ds 2 жыл бұрын
Do you still have numbness in your legs or did that go away? Are you able to feel temp on legs?
@theadaptivefamily 2 жыл бұрын
Overall the numbness on my legs have gone but I wouldn't say feeling is restored. I can't really tell texture very well and sometimes my legs twixt because they don't know what's touching them. My right leg for sure cannot feel temperature but certain parts of my right leg can. It's very weird
@shaniqueedwards6476 2 жыл бұрын
I'm glad you are back, really motivational👍
@theadaptivefamily 2 жыл бұрын
Thank you. Very much. I appreciate your encouragement
@shaniqueedwards6476 2 жыл бұрын
I have NMO, and the heat is doing me really bad.
@theadaptivefamily 2 жыл бұрын
I'm sorry to hear that. Hopefully you can make some progress towards it
@shaniqueedwards6476 2 жыл бұрын
What you said really motivated me,I do realize since recently that during summer symptoms increase and the body gets weak but I have been overlooking it. But now that I know, and as you advised regarding nutrition, being hydrated... Gone try that thank you.
@theadaptivefamily 2 жыл бұрын
I'm happy to hear that. Follow me on Instagram and we can communicate through there so I can attempt to help you out on your recovery
@shaniqueedwards6476 2 жыл бұрын
I did... And I have recently messaged you also. #nyquese/Shanique
@brandonpainter163 2 жыл бұрын
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.
@theadaptivefamily 2 жыл бұрын
Thank you so much brother. I appreciate you