What Does Transverse Myelitis FEEL Like?
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- Опубликовано: 6 окт 2024
- Transverse Myelitis is kind of a mysterious disorder - it seems to manifest itself differently in every story I've heard. In this video, I'm sharing what it has felt like for me over the course of my experience. From involuntary muscle spasms to the sensation of floating, it has certainly been WEIRD! Haha!
The word I was looking for in regard to not knowing what position my legs are in is "proprioception."
I filmed this video a week ago, so at the time of my posting, I've actually been here in the rehab facility for two weeks, improving every day. :)
If you'd like to know how I came to be diagnosed with Transverse Myelitis, I share the story in this video: • Diagnosed with Transve...
Hey, lovely ladies! I'm Jesse May Danson, and amid being a Christian, a wife, and a mother, I'm fairly dancing for joy! Please subscribe and join me on this journey. :)
My relationship with Jesus Christ is the most important part of my life. I explain it in this video: • Video
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I am Caitlin, age 12 from Perth WA and I was diagnosed with TM 8 years ago so I was 4 and a half years old. I was paralysed from the chest down with 30% chance left of walking again and have to use 4 hourly in-out catheters. I am now about to start my first year of high school and can now walk and ride my bike. I still need catheters and therapy but am better than ever!
Caitlin Millington I’m so happy to hear this! I’ve had TM for about two years and am paralyzed from the waist down. I have feelings but can’t stand yet. This gives me so much hope! I’m so happy for you! ♥️
Caitlin Millington For some reason, I missed your comment last year, and just now found it! Thank you for sharing your story. 😊 Hope this message finds you even more improved! 🤗
Your positive attitude is incredible. I feel like I am truly seeing Christ in you! This is just the strangest situation. Thank you for being so open about your experience.
Thank you for your encouragement, Erica! :) It truly is strange! But the Lord has been teaching me so much through it. ;)
Erica Goehring I agree because I was super depressed when I had my TM attack and got very bad during my recovery time until i was able to go back to work (2 yrs later) which i still deal with small bits of it. I refuse to take antidepressants. I am close with our LORD JESUS CHRIST but I’m in pain daily and it’s hard to always smile through it. When I thought I was at my strongest I started getting electrical like spasms through my legs at night that would wake me in severe pain that causes me to cry like an infant. I’m already on a regime of medication for pain nerves spasms and I hate that I have to take them and I refuse to add anymore to the mix.
Praying for your full and speedy recovery! ❤
Thank you so much! :) I'm blessed to report that I am now nearly completely back to normal! I have an update video on my channel if you'd like to check it out. :)
@@DansonforJoy So glad to hear that! I will definitely check out your new video!
I got TM in April of 2014. It's been so challenging and the pain has been overwhelming. I finally got a spinal cord stimulator a little over 2 years ago that's helped greatly. Glad to have found your channel!
Thank you for commenting! I'm sorry the pain has been so great for you - I'm glad the stimulator has helped. Prayers for your continued healing!
Hi. I'm about two years into my TM recovery. Please tell me what a spinal cord stimulator is. Thanks.
What is a spinal cord stimulator and did that help?
Suffering from transverse myelitis from 3 years 😢😢😢😢
I'm so sorry for you. My symptoms are the same and it makes me want to cry for you because I know how uncomfortable this is. It doesn't seem fair and i ask why me ? I'm almost two years into it and I've had some improvement. Stay strong,keep trying, and don't give up hope ! ❤
Jeremy Lowery Thank you so much for your encouragement! I’m grateful to God that I can report I have recovered - I posted an update video on my channel. 😊 Praying for your continued recovery!
Hi, My husband also has Transverse Myelitis for the past 18 months. His was a very sudden onset and was paralyzed from T5 down. He has regained his mobility to walk (Thank you Jesus!!!) after intense PT at a spinal injury facility. The Journey didn’t stop when he started walking. He is still having on going symptoms and works hard everyday to strengthen his muscles to face the daily tasks at hand. The hard part is that this disease is very rare and we haven’t been able to connect with others who have similar experiences. I just came across your video because his YOuTube video ended (about his own journey at Within. Health & Wellness) and yours popped up. So glad to see others are willing to share. Not many know about it or understand the struggle. It’s good to see others share & we have someone to relate to.
Elina Bogdanovich I’m so glad you let me know you guys are here! 🤗 Praying for your husband’s continued recovery!
Danson for Joy thank you for your prayers. It’s been a journey that is not over.
I’m so so glad o hear your healing and the comical update! I just love your attitude, Jesse! My children have loved hearing the updates I give them when we’re praying. They ask daily about my friend ❤️
That is so precious, to hear that your children are so caring and that your family prays for me! Thank you, Ashton. :)
I'm going through this now. I was in the hospital for 2 weeks. Currently on the mend as well. I wish you the best in your recovery.
THANK YOU - THANK YOU - THANK YOU!!! I was just diagnosed and am 70 years old. This is so helpful!
Glad you found it helpful! :) I'm praying you'll have a quick recovery.
It's 3 in the morning for me and I'm watching this and remembering everything you are explaining .. from back pains to urinary retention to unable to walk in a very short time .. doctors told me Gillian bare syndrome then later Transverse Myletis .. good to hear you are recovering.. I am also recovering .. it's been 4 days since I came out of ICU and I am able to walk already thank god .. but I don't have perfect balance and my strenght in my lower back and buttocks isn't that good .. need more therapy in those area .. it would be nice to be in contact with you to exchange our progress .. if there's any social site that your on and would not mine for us to connect then please let me know .. keep on working ..
Glad to hear you are recovering! Thank you for your comment. :) I'm walking now, too, but I have to be cautious with my balance. I'm not currently on a social site where we could connect, other than here on RUclips, but I did hear that there is a Transverse Myelitis support group on Facebook that would probably provide encouragement and community. :)
such a beautiful and humble person.
I had TM and have recovered but your story is amazing... God Bless You
So glad to hear you recovered! :)
Hey jesse, randomly came across this video but i developed TM early october 2017. its effected my senses rather than motor control. Stiff feeling belly, back forearms & at one point i could barely feel anything with my hands. 6 months in now and all still slowly improving, can use hands again for most things though fiddly things like buttons are a struggle! your recovery will take time so stay patient & positive and fingers crossed you get back to 100% ...
if you have access to facebook you can join a private group called “the transverse myelitis society” it has many people who have gone through or going through it, may be of some help/guidance to you.
Thank you for sharing your experience and recommending the Facebook group! :) I'm AMAZED at how TM seems to affect people so differently case to case! Praying for your continued recovery. :)
Yours sounds so similar to mine yerbloodclut im 8-9 months out now but still can't feel my hands/fingers and struggle with all that fine motor skill stuff like turning pages, or buttons, or taking off my sons nappy etc. And every now and then my legs go tingly but it goes away. I'll have to have a look for the support group, thank you
Cee Poulos - if you get on the group, search for me on there “Paul Sadler” id be interested to hear more about your TM experience to date.....
Cee Poulos yes but lots of non-uk people on there
I can relate with you. I got transverse myelitis in Florida miles away from my home up in Jersey. My left arm got affected the most. I wasn’t able to move my dominant arm and went in intensive care in Miami Children’s Hospital for 11 days.This happened in like 2013. One of the worst times in my life being away from home and dog in a hospital not being able to move my arm.After months of therapy Im able to move and do everything with my left arm although it’s very weak and I don’t think it will ever be the same again.
So strange, isn't it? That sounds hard, being away from home when it happened. I'm glad you were able to recover for the most part. My toes aren't quite back to normal, but otherwise, I'm healed, too. God has been good. Thank you for commenting and sharing your story! :)
Hi my name is Selena and I am currently fighting transverse myelitis, it has been almost 2 months since I got diagnosed I am taking 200 steps every day but my dominant side is taking longer to progress. Also I do not feel pain and when I first went to the emergency room I only had pain in between my shoulder blades and then the next morning I couldn’t walk or move my legs . I feel tightness in my calves and thighs and I feel tightness in my stomach and back. Do you have any tips on how I can solve the tightness in my calves and thighs
My story is similar... I'd say walk as much as you can. Keep those muscles warm
Selena Padilla For some reason, I missed your comment last year, and just now found it! Thank you for sharing your story. 😊 Hope this message finds you even more improved! 🤗
keep your head up it will get better you are an amazing person
My friend has it his legs started dragging one day .now he is basically paralyzed .and his legs and hands lock up all the time .can barley walk without a walker
I hope he’s getting treatment for it. Prayers for his recovery!
Thank you. My 4 year old grand daughter is going through this now. Lost use of arms and legs.
Jen Bradley Oh, that makes my heart ache! So young to go through such a confusing ordeal! I have girls around her age, and imagining one of them going through that is so hard. I’m praying for her, that God would heal her little body quickly and completely. 💗
Same diagnosis 8/9/20 to MS 12/9/20
thankyou for your posting
I understand every single word.
Hugs to you! :) Most people, of course, can only imagine...and I myself am still kind of amazed at all the strange sensations. ;)
Suffering from transverse myelitis from 3 😢😢years
I’m so sorry! 🤍 Praying for your healing.
Hi Jesse... I'm Lynda from Malaysia... a TM survivor ..
Sharing with you my story... hoping it can help you in your journey to recovery ...
Keeping a positive mind is very crucial..face each day at a time.. .. Being a Muslim....Prayers is our best "weapon" to combat hardships .. Regardless of your faith.. I believed GOD is alwiz near to hear your prayers ...
I had TM 9yrs ago (2009) 7months pregnant at age 35..
I was paralyse waist below abt 6months ..With stearoids meds & extensive physiotherapy, my paralysis gradually improve within 1yr..starting frm standing..then walking with various support mediums & later able to walk again..well it's not 100% bck to normal tho... when you mentioned about that "tightened sock felt around yr feet"..
I really feel you dear...
for 9 yrs now it does not go away...feeling that is difficult to explain to others... leg spasms stil occur too.. esp during nite sleep.. i can walk but forget running ..brisk walk for only short distance.. ppl who do not know woud be surprise if i told them i was paralyse b4... but the real fact that my both legs are weak esp for stairs.. Most significant compromise woud be both my urination & bowel movement ... i'm on pads 24×7 coz i can't control when it wants to burst..
bowel on contrary - constipate evryday..i had to take oral meds or via the anus to help "dispose".. It does greatly impacted my quality of life since I'm a working Mom...having to go to work with all these "hidden disabilities" are quite challenging but I have learnt to accept my condition & had to make adjustments.. Now at 44 with permanent effect from TM...
additional challenges with aging factor now knocking on my door .. I pray that GOD will ease your recovery journey dear... you are not alone in this "fight"... *Hugs*😘
Thank you so much for your encouragement and for sharing your story! :) As a Christian, it has been so comforting to know that God is in control and that He has a purpose in this challenge. Seeing Him work in my life and in the lives of those around me has been miraculous! :) I don't know if you've seen my update video, but I'm blessed to say that I am almost completely healed. The only remaining effects are a slight tingling feeling in my toes, and occasional wavering of balance. I'm truly amazed that God allowed me to heal so quickly. The difficulties you shared that have stayed with you over the last nine years sound so challenging, although I'm thankful you've been able to walk again. Please know I am praying for you! :)
I have tm to and she explained everything i feel
Hi there Miss Nur,
I'm also a fellow TM patient from Malaysia I've been a patient since 2016 my symptoms have worsen day by day and the pain is unbearable at times. May I know if there is a way to contact you and if you are able to share with me some of your treatment methods and which hospital or medical facility did you get your treatments from? I will be waiting for your kind response. Thanks so much in advance!
Best Regards,
Patricia
You described it perfectly ive recovered from tm c2-c4
I can relate
Thank you for commenting, and congratulations on your recovery! I realize that TM can be different for everyone, so it's interesting to know that other people felt the same sensations I did. ;)
I'm on it now 4 months in. Tho in lots of pain
This sounds very familiar..and mine has been ongoing for 3 months. How long did yours take to reside or before you started to feel better? I get better with steroids but then back to feeling bad after being off of them for a couple of weeks. I have a tight feeling around my ribs and back with a vibration in my spine. Did you experience that as well? My ms specialist is still trying to figure out what this is.
Mine got better after five days of steroids, and praise God, I was "back to normal" after a few months (far faster than anyone expected). I didn't have the exact symptoms you described, but from what I hear, Transverse Myelitis affects everyone differently. Has your specialist considered Guillian-Barre? That's what they thought I had before they realized it was TM.
God bless you
Danson, m Sumi from India, facing same problem but improving day by day, it's motivating after watching your inspiring video, Wana be in touch with you 🤞
sumi chetry I’m glad you were encouraged by my video! Praying for your continued healing. 😊
@@DansonforJoy want to know more about your daily exercise and routine while you were going through TM, will you ?
sumi chetry Once I had the accurate diagnosis, I received steroid treatments for one week, then was moved to a rehab facility where I had physical therapy and occupational therapy every day. First I learned to scoot from my bed or chair to my wheelchair and back, then I learned to stand, then I learned to accurately place my foot and then shift my weight to take a step. It was a very step-by-step process learning to walk again, strengthening my muscles, and reminding my brain how to connect with my body. It was slow, but with daily effort, I was able to build my abilities. I was also careful to rest, eat nutritiously, and enjoy myself as much as possible, keeping a positive outlook most of the time. Prayer and trust in God was a powerful factor in my healing, as well. 💗 I realize my opportunity for daily therapy is not available to many people, but purposefully making (safe) efforts to strengthen the body and help the brain remember nerve pathways for movements can be done at home as well. 😊
@@DansonforJoy thanking you so much dear, such a cheerful lady I have ever met. M also progressing day by day , I believe in my God, exercise my parents and my fiance, hope to be in touch with you always, keep motivating and stay fit dear..lots of love and hugs ..see yaa🥰😘
Danson for joy, how long it take you to walk properly again and do you have any complications now??
I'm also in transverse mylitis since 2009
Praying for your continued recovery!
Thank you
hi its been over two years since you posted this but I just wanted to ask about your progress
is everything back to normal now
Thank you for checking in! Yes, praise God, I did make a full recovery. I posted an update video about it to my channel, if you’d like to see it. 😊
Love you gorgeous friend!
Love you, too, Jessica! :)
And my friends legs are very very stiff
Have you recovered now ?? My brother too is diagnosed with transverse myelitis and his right leg is numb and weak
Yes, praise the Lord, I have experienced a full recovery. I made a video about it on my channel. Praying that your brother will fully recover, too! (I met a missionary with your name once!)
I have same diagnosed how long you suffer from TM
my had has it he said it feels like he is walking on golf balls
It's fascinating how different everyone's experiences with TM can be. Praying for your dad's recovery!
Hlo mam I'm rakhi from India , this time is very hard for me and my husband bcz he is suffering from transverse myelits 😭 11 days ago his lower part of the body was not working . And he was not able to sit without any support but after 11 days he is able to sit without any support and move his legs slowly slowly. Now he has on the treatment which is called plasma exchange therapy. Mam plz 🙏 reply reply me in how much time he will recover completely I have a baby 1 yr old plz help me nd reply me soon .his hands, shoulder are completely fine nd we see much improvement which I mentioned you above. Since his starting time of tm
Do all cases of this condition cause not being able to stand or loss of use of limbs
From what I’ve heard, yes, but literally every story I’ve heard is different. 🤔Perhaps not every case involves loss of mobility - one would have to research.
What medication are you taking for TM?
None.
Did you lost your urin control
Not exactly, but I wasn't able to resist the urge for more than a couple minutes. Not very convenient! LOL Much better now. :)
bittu chowdhury i have from time to time. my smoking doesnt help my fatigue either. i really need to quit my nasty habit cuz it sure doesnt help.
Justin Scrivner when I first had my TM attack 10-2-15 I was retaining my urine and required a Foley catheter pretty the whole time I was hospitalized (1month). After I got out of the hospital I was incontinent super bad, like non stop. It was like where is all this urine coming from? Now I have accidents here and there. I am an RN so I wear depends to work because I knew I wouldn’t be able to run to the restroom when the time comes as I do at home. A lot of nights I wear the depends and nothing happens but there have been a few where thank GOD I had it on!
IT FEELS LIKE CRAP IT FEELS LIKE CRAP. Sorry I just started screaming because I have that disease
ic0nic_alina I’m sorry. Praying your recovery is as quick as possible.
How long you have transverse myelitis and have any sensition and motors nerve feeling I feel so weakness and I want to know do you still take medicine and still physiotherapy
I had steroid treatments first, then intensive therapy in the rehab facility. When I went home, I could walk with canes, and then I regained my normal walking abilities and balance within a couple weeks. My recovery is one of the fastest I’ve ever heard of, for which I am tremendously grateful. There is hope for healing!
@@DansonforJoy that's good you can walk you know what I relize maybe I'm wrong in that case transverse myelitis recovery genrally poor I don't have facilities like usa state right know 12 year of journey with TM I almost recover 60% I can walk with canes and bladder dysfunction know thanks god I much controol on my urine and I feel both legs heavy and weakness
@@DansonforJoy that's good you can walk you know what I relize maybe I'm wrong in that case transverse myelitis recovery genrally poor I don't have facilities like usa state right know 12 year of journey with TM I almost recover 60% I can walk with canes and bladder dysfunction know thanks god I much controol on my urine and I feel both legs heavy and weakness
@@Faizan128 I pray you’ll continue to recover!
@@DansonforJoy thank you your so kind thankx for motivated me