Transverse Myelitis: Snapshot of a rare disease

Transverse Myelitis (TM) is an autoimmune condition that affects the spinal cord. It classically can cause weakness, loss of sensation, pain and bowel or bladder dysfunction. It has historically been separated from multiple sclerosis and acute disseminated encephalomyelitis by the fact that only the spinal cord is affected, presumably leaving the brain undamaged. This description of the disease is based on MRI images of patients acquired as part of clinical evaluations that show a lack of damage to the brain.
In 2012, for the first time, our team at UT Southwestern and Children's Medical Center Dallas identified a significant number of TM patients with evidence of cognitive dysfunction in areas such as attention and memory. Such cognitive dysfunction has the potential to interfere with daily functioning (i.e., learning, school and work performance) and threaten one’s quality of life. Findings from this study raised a concern for unrecognized brain-based damage in patients with TM. It has been known for some time that MRI techniques do a poor job of visualizing changes within the cortex - the outer lining of the brain. We hypothesize that TM patients with cognitive dysfunction may have experienced cortical damage that are not readily apparent on normal MRIs.
To directly support our research, click here: www.consano.or...

[@alvin-D-elliott]

My twin sister was just diagnosed with this disease. I've never heard of it until recently. I pray that all those afflicted with this illness would recover fully from this in the name of Jesus.

[@adz24888]

amen. my twin brother wqas diagnosed with this in 2013 i hope the best for your sister. its hard watching your twin go through this.

[@aliciagentry1117]

I was diagnosed with transverse myletis in March of 2012.. and was paralyzed from waist down. ten years later with God's help and my family and friends I'm still able to walk again...I still have many long medical issues but I'm thankful that I can still be self independent and live a full filled life.. I pray that any one who has been diagnosed with this disease recover...

[@alvin-D-elliott]

@@adz24888 Thank you 🙏🏾 I pray the same for your twin.

[@thirteene4897]

i was paralyzed from the waist down at 16 with this disease, and i can walk to my college campus now. it's taken some time, but the little milestones are everything, and i hope you've been there for them. i know this might be five years late for you, that many might be gone, but my sister was there the first time i could feel getting pricked by a thorn again in my leg, and we hugged each other and cried in the woods together, before running back to show our mom. it means so much.

[@SCHutchinson]

My mom was the third case ever in the United States and the first surviving patient. This disease/disorder needs a lot more attention.

[@ipullam]

Hi there, I would love to hear your story. Please message me!

[@gopalkrishnan1668]

Hi I would like to know more details .plz can you message me.

[@shahjadmomin3847]

7666662326

[@shahjadmomin3847]

Please contact me WhatsApp

[@djsandradee7917]

Would love to connect with other TM people...more so my mom who was just diagnosed with this! Please DM me! Thank You!

[@britney2154]

I have this, im going through it right now. Its hard and its a journey. Plz support people who have this, its really hard to go through.

[@rs570]

I have been in this condition since 2005 and still fighting with

[@calinmccarthy1991]

Man this video definitely hits home~ Going on 13 years living with this. Eternally grateful to be walking/decent grip strength/fairly operational (but wonky) nervous system. My abdomen, legs, and hands were the most affected. All I can say to those affected by this, is that you'll find out over time things DO return...specific motor functions (fingers, ankles, leg/hand muscles), complex internal nerve functions like bladder, bowel, reproductive, etc. This disease demands a toll of patience. So whether you possess that or not, you will learn to develop a patience with things you never knew you had. Having to relearn basic activities, something as simple as having to use a lighter differently, or change the way you button a shirt can be incredibly frustrating. Not only is there body to contend with, but also the mind. There's a myriad of difficult feelings to contend with as time goes on. It's truly a trickle down effect that forces you to re-evaluate how you live your life with this new experience. On the exterior, it's not entirely apparent there's an issue, might look like someone just had a rough backyard game of football, or just ran a marathon. But inside it's an absolute mixed bag of cramping, numbness, soreness, hyper/hypo sensitivity to heat, cold, wet, dry, etc. The touch of clothing becomes souring, and the thought of wearing enclosed shoes or boots is suffocating. To all those affected, I promise you with time and effort, the body will make small strides towards how it used to be. I've had some happy milestones that occurred at one month, 2 years, 4 years, and yes...12 1/2 years. This disease from my understanding is not progressive, and the damage that occurs as a result of the swelling is localized to that event. So please keep your heads up if you're living with this, or have just been recently diagnosed~

[@vaishaligarg4125]

Hi, I have a 5yrs old kid in my family who has recently caught by this disease. He is on ventilator since last 20 days. Just wanted to know, if this is common in initial days if he stays on ventilator ?

[@vaishaligarg4125]

And also, he is done with all the steroids and plasma exchange therapies. But he has 0% improvement, is this the case initially

[@calinmccarthy1991]

@@vaishaligarg4125 Greetings~ I'm sorry to hear this :( I am uncertain regarding the ventilator, it affects each person differently, it's probable that the area of the brain or spine that's been affected is the area responsible for breathing and lung function, which is why a ventilator is being used to assist with that. From what I understand, once the initial round of steroids/ other medicines have been introduced, the rest is up to the body to remedy the inflammation in the affected areas. Improvement to say the least is a very, very slow process. My first improvement took about 2 months, and continued for about 3 years. The best thing one can do would be to have a lot of patience with the person affected, it may take some time to regain normal faculties, so just keep up those positive vibes, and celebrate the little victories~

[@skyjericho9724]

@@vaishaligarg4125 yes it is! Because his diaphragm was affected so he Has to be ventilated to protect his airway. My mom was on a ventilator for about 20 days as well

[@Papeone111]

Thanks for the encouraging words! My fiance and I are going through this now and its been 4.5 months. It only affected the right side of her body. Luckily she's seen decent recovery and has regained the ability to walk unassisted and bowels/bladder recovered decent as well, however her right arm and hand seem to be taking much longer to heal. She's seen some recovery in the arm and hand but like I said it just seems to be at a much slower pace. Lesion in C3-C5. Any experience getting arm and grip strength back? Or how long it took?

[@maryamsweet7]

My son diagnosed with TM when he was 12 and He’s 24 now.Its a daily struggle for him and people who live with them.i pray that whoever is going through this get well soon. Amen 🙏

[@hershy1594]

I'm just glad my pain is just in my back with the occasional sensational overload. I can't imagine not being able to walk. Way to stay strong!

[@iamblacksheep1]

My best friend was just diagnosed with Transverse Myelitis. He has other underlying conditions, but I hope he can fight his way back from this.🙏

[@dukessl13]

am 32yrs old and I was diagnosed with TM back in 2000 I wish I had the funds to go see more specialist have not lost Faith ik this will take a miracle for me to ever walk again

[@rustler540]

My daughter was running at school and her leg just went out,she couldnt move it. We went straight to the er and they told us they didnt know,they couldnt find anything,and they thought she ws making it up. We where seen by another dr who knew us,and knew she wasnt,he sent us to the big hospitol in Asheville. We where there for about a week doing tests and nothing showed up,dr's still said it was probably in her mind. Her leg fortunately started working a little after about 4 days,she never lost feeling just movement. I took her to Duke university where they diagnosed her with ATM. she was 13 when it happened,now she turning 16,she can play soccer and is doing really well,but the leg that was affected is still smaller,and has weak days.Hopefully it wont reaccure, I am still very under educated,but I thankyou for this video.

[@SuperNfraser]

Would love to be kept up on new treatments and therapy. I don't hear enough about the crippling chronic pain associated with TM. I am on gebapentin But everyday is a struggle and I don't like taking or paying for medication. Finally I wish I could hear more about how stress and emotional times increases the pain and how others are not educated enough to know the impact to the body. Thanks for making this video, more people need to understand I wear a knee brace because my right leg is dead not an ACL injury!!!

[@stephenwarren5517]

I had this when I was 51. I am 63 now. I am one of the lucky ones who recovered 100%. I lost all functions below the waist but after being given steroids in Prince of Wales Hospital I recovered fully. I feel for those who dont. It came on very suddenly. First sign was I could not urinate than the next day I could not walk. I was first at Sutherland Hospital than transferred to Prince of Wales. They actually gave me the choice of 2 Hospitals. The one I picked knew what they were doing. As soon as I could walk after about 3 days I was up walking around the Hospital to get function going as much as possible. When I left Hospital after 10 days I could walk fine but still not urinate. That happened a few weeks later. I nearly passed out when that happened, I guess the nervous system was just reconnecting. Anyway I wish everyone who has it a good recovery.

[@Hanumanth88]

Sir Hope you recovered completely🙏 My wife having same symptoms after 15days of treatment now able to walk, but still could not urinate. After how many days you urinated / you’re able to feel completely cured.

[@mustafabattlebay]

Imagine having this disease while you are living in Iraq in mousl city I fought this disease for 3 years and still ... I never wish this happen even for my worst enemy .. STAY STRONG everyone

[@kwaqar8164]

Have recovered from it??? Or is it still going on?

[@VS-lr6zb]

Stay strong bro

[@Gloomilo]

Man... I wish I had these doctors..

[@LadyKrissy8]

12 years with TM now...keep going warriors!!

[@kimbers1238]

Thank you for your encouragement. I wish I had Annie's Drs. Please keep spreading the news to the medical doctors

[@gracerobinson534]

I was diagnosed with TM when I was 13 months old, I'm now 46 and still struggling. There doesn't seem much help or support in the UK.

[@BrianMillsSkills]

The NHS sucks so badly.

[@yvonnemccullaghward361]

Yes.I get angry watching videos like this. Joy system just told me ‘there is nothing more we can o for damaged nerves’ .SInce then despite pain,poor mobility,fatigue,incontinence,etc I am on my own with no support medical or psychological

[@garythomas5279]

I've been fighting the beast for two years now getting stronger everyday , I tell myself and all that it's just a bump in the road.

[@markj.beukema2131]

Were you afflicted like this young girl?

[@peterdixon9963]

I too was diagnosed years ago. It’s now been 25 years since I was sitting in my class in high school and felt my legs go to sleep. Over the years I’ve gotten my strength back and even though The sensation of touch and temperature isn’t the same my body has adapted to where I hardly notice the difference anymore. Stay strong it does get better every day.

[@GraduatedIn]

ΑγαΡy id rather get this over being immunocompromised just sayin

[@garythomas5279]

Yes i was back to childhood wearing depends and in a wheelchair but recently i walked from the Washington Monument to the Capital Building and also up to the 3rd level at Giants stadium I'm done sitting KEEP FIGHTING TM family.

[@Zindagi_aur_Ayesha]

It is 2020 now and i have been fighting it

[@megoins73]

I just found out I had this as well. I was very fortunate with my recovery.

[@beeeyonder]

Melvin Goins how long did it take you to recover? And did you make a full recovery?

[@megoins73]

@@beeeyonder I'm still recovering slowly. I was very lucky after the research I did after the fact. My hands are still "weird" and partially numb and tingley. Other words are hard to describe. I have days where I feel very off.. I made a video on my channel if you like to watch. No I'm not inlisting you to watch for views. lol but it explains in more detail what I went through. I think I made the video to feel better about my experience and hope anyone who has these symptoms will go to the hospital or see a specialist sooner then myself....

[@rickorum3869]

Just got diagnosed have some movement in one leg small twitch in the other happened Dec 27 2017 had plasma exchange now rehab you all are an inspiration thanks for the videos

[@lavendarfalls]

Hi Did you have plasma exchange as soon as you got it?

[@thirteene4897]

Me and Annie had almost the exact same experience. 16, and the day before, had just gone hiking. The next day, I collapse at school, and by 5pm, I'm being transferred to my local children's hospital for a pediactric neurologist. Instead of moving my nerves, they decided to attempt to remove the imflammation entirely by taking away the cause - my plasma, attacking my spine. It worked, and I can walk normally most days, and with a cane, others. I was trying to play kickball 6 months out of the hospital, and I was out in two weeks, when they told me two months. I was totally paralyzed, and still cannot feel to the same extent in my legs, to this day. We still don't know what exactly caused it - I had no bug bites, didn't test for any comon viruses or bacteria, it just... happened. I'm not completely better now, but I'm functional, and very happy.

[@happyanne555]

I wish I had these doctors.I live in France,,after the original TM diagnosis they got fed up with me whe I tested negative for MS and said It's all in my head.....

[@applesaregoodeatings]

anne stephenson what?!? Thats completely bullshit

[@Yfh9789]

I diagnosed tranvarse myelitis 5 months ago.my case is the first case of Bangladesh

[@zahidlatif874]

Proud of your work doc's..

[@stevencorona1505]

my son was diagnoses with transverse myelitis. we're here in the hospital right now. I have never felt so scared in my life.

[@jimgiraffe5253]

how many silver fillings has he got ? any vaccinations recently ?

[@stevencorona1505]

Jim Giraffe he's only 7 months that old so he doesn't have any teeth yet. and for vaccines, he only had his flu shot DTap.

[@jimgiraffe5253]

mercury is the common theme. mercury in silver fillings and mercury in vaccines..also aluminium. you need to chelate to get this out of the body. search for Dr Andy Cutler chelation. I hope you get improvements with your child.

[@jimgiraffe5253]

also search for dr suzanne humphries , she may be able to help. if your partner isnt already , you need to be breastfeeding your child, it will help build its immune system. - this means your partner eating properly - if you need more help , let me know :)

[@B6east]

Steven, I am so sorry to hear about your son....it is a very scary condition and takes us all by surprise. How old is your son ? I had been an RN for >30 yr.s when I was hit by this condition and I had never heard of it. I was paralyzed from neck down, VERY scary, I asked my husband if he had looked it up (on his ever-present I-pad) and he said "Yes, and it scared me to death". I told him "Then don't tell me anything about it, I just want to take it a day at a time." To give you hope: I have made an amazing amount of progress- I can walk (with canes or hiking staffs), and a a lot of my other symptoms have lessened or at least become more manageable. Young people have a LOT of healing potential, so have faith and I will keep your family in my prayers !

[@lindanagle4554]

I was diagnosed in 2/2010!!!! Keep on keeping on!!!!!

[@fouseytube8163]

I was diagnosed with TM 16yrs back at age of 12... Still m fighting with hip n kneee contracture.. my advice to early tm patients.. appoint good physiotherapist n do lots of strenthing exercise to each n every weak muscle..

[@tmilatos]

I recently joined the club. TM sucks, early and proper treatment is vital, hopefully I'll get better some day.... :-(

[@Ash17030]

You will, the body is a great healer :)

[@applesaregoodeatings]

How ya doing now? I joined the club four years ago

[@snoopyrogue359]

I went through this when I was 12 in 2013. Today I’m ok, but transverse myelitis affected my left arm the most. The arm is still weak and I can’t bend it all the way. It sucks, but I came out of it way better than most and I’m grateful. That experience really changed the way I viewed life.

[@Papeone111]

If you don't mind me asking, how long did it take to get some functionality back in your arm?

[@snoopyrogue359]

@@Papeone111 I got really lucky with a year or so of physical and occupational therapy. I think I may have exaggerated my comment a bit. It’s not like I cannot bend my arm. It’s just maybe not all the way. The muscles and/or nerves are dead

[@triggb71]

I really hope that she makes a full recovery. I couldn't help but notice the huge beautiful homes in her neighborhood as well as her own family's. It's great to have plenty of money and great insurance to get care like she's receiving.......would be nice if everyone regardless of income could have access to the same level of care.

[@kimberlymarsh6714]

My daughter was just diagnosed with this? I'm so scared. Can you fully recovered survivors please guide me through this?

[@itz_premium]

Trying to learn more about this disease after reading an idol of mine suffered from this.. This sounds awful and completely unnecessary on the part of Mother nature. I hope they find an effective treatment or cure for this disease and find working and easy to access rehab for affected survivors. Im happy to see all the comments and support from everyone to each other. I have family members with debilitating nerve damage in various body areas but the psychological and emotional toll a disease like this can have on folks can be nothing short of nightmarish I am sure. Get well and stay well soon everyone! One day at a time is all one can ever do.

[@qwertyuiopasdfghjkl9879]

Joey Jordison?

[@itz_premium]

@@qwertyuiopasdfghjkl9879 half yes. Been a drummer most my life and a slipknot fan for less time. But i have an extended family member I used to spend more time with who has this condition. But seeing Joey die the other day sort of reignited my curiosity for why this disease exists. I was just aware of it before, didnt know much other than it was a nerve thing that didnt feel great.

[@ARALVE-me6ee]

I'm one of victims of this disease can i be able to run again. Can anyone help me out or give some suggestions to recover this evil disease

[@someshkadam2441]

Joey jordison brought me here , he won the battle against transverse myelitis..

[@Ash17030]

Yeah same here

[@elisabethm4293]

Yeh same. This is horrible, but at least they have a possibility of recovery. I respect any one who can live with this and still see a future of recovery. This is just scary.

[@VampiraVonGhoulscout]

somesh kadam Me too. I wanted to do some research to understand what he's going through. I'm going to his first UK show in two weeks and I'm bringing a massive sign that says "Welcome back, Joey!".

[@lewislawrence8408]

Since the 13th of March 2020 just as the covid-19 virus struck I've been stuck in the imperfect storm clawing my way from my own fears but I wish someone knew what it was like to be in my shoes

[@xukeith33]

I am 40 and have had it since age 9. I walk with crutches still.

[@provocativeramen8654]

My aunt has it. Researching, seeing what it is exactly.

[@jahyameikoleneespanol8248]

My twin sister suffering from transverse myelitis. She was paralyze from neck to down and cannot breath by herself. She's using mechanical venitlator to breath about 2 months ago until now.

[@lavendarfalls]

Hi My brother is going through the same. Has the doctors suggested anything to improve her recovery or treatments?

[@nickyp6387]

I had this after a case of pneumonia my legs bladder and bowels all stopped working I was 29 at the now 35 I was very very lucky for a few reasons one im in the uk so I went to hospital got fixed and didnt have to pay a fortune plus my doctor who looked at me first recognised it staight away (for something so rare as well) and I was put on a drip with with a steriod staight away and I was walking within 8 weeks I still suffer with weaker legs then normal and my bladder and bowers have a mind ov they own but Im walking I work so I think my self lucky as I have seen so many cases worse then me

[@tylergirlrobinson1820]

I am in a hospital bed with transverse myelitus- they think. I am still waiting on more results from my spinal tap. It's so difficult to lose your independence.

[@rasnaarneja2104]

@@tylergirlrobinson1820absolutely

[@jenss.3613]

I have the beginning of transverse myelitis, but doctors don't believe me, they say I am just psychosomatic.

[@queenme8666]

Find different doctors. They tried to say the same thing about my son too.

[@steveboggs9025]

guess i got this shit too. went to bed friday, woke up saturday numb on the right side of my body. right arm function is about 10% if that. just got out of the hospital. they are calling it t.m., but still not sure what it is.

[@laibakhan8437]

How are you now?

[@laibakhan8437]

I'm dealing with the exact same issues.

[@steveboggs9025]

@@laibakhan8437 Hello Laiba. Turned out to be multiple sclerosis. I have numerous lesions on my brain and a mass in my neck. While they had me in the hospital I discovered I was in stage 4 thyroid cancer. Praise God I'm cancer free now. The M.s. is making life difficult...walking, sitting, standing, manual dexterity, getting dressed etc. Have had some other issues related to the m.s. treatments, but all in all I'm alive and doing well. Kind of anyway. Thank you for asking.

[@laibakhan8437]

@@steveboggs9025 Hey Stacey, I'm glad that you're doing well and I'm so happy that you're finally cancer free. My mother also has hypothyroidism and she's in pain everyday, hope she'll be well soon. About 3 months ago, I woke up with the left side of my body completely numb, later the spasm reduced to only my left arm. The doctors can't figure out if it's multiple sclerosis or transverse myelitis yet. Just completed my 3 day pulse therapy of corticosteroids. I'm not sure if I'll ever be able to write again. I'm majoring in chemistry and it's really difficulty to manage everything with my hand stiffness. (I'm a lefty, haha). I don't want any false hope but do you think we can ever recover if not soon? I'm extremely distressed these days.

[@steveboggs9025]

@@laibakhan8437 don't worry you'll be fine. When I received my first steroid treatment I lost almost complete function of my right arm. I couldn't write, tie my boots and could barely dress myself. Went to physical therapy and received treatment. I went overboard on the sets and repetitions and within a month I was a lot better. There's hope and you'll be fine. You got this, you just need a little help right now.

[@siscacecilia4155]

My little sister.. I don't know if she had TM, MS, ALS or something else.. Doctors here still can't determine it.. MRI result show that she had inflammation on spinnal chord.. Once in 3days she had legs and arms's cramp and can't hardly breath.. She feels like burned, stabed, and slashed.. How to calm down cramp sensation and other than pain killer injection.. Thank u for sharing🙏

[@Singledaddy734]

They should check for gbs too.

[@Sun_Sunnie]

It's been 10 years since I've experienced that disease. It was an *awful* experience. Until now I can't move my fingers on my left hand.. (thank God my right hand is improving coz I'm a right-handed person) and my legs were still numb..but i can walk straight now ✨😊 Just keep praying, and help your self. *SELF PITY IS A BIG NO, NO..*

[@kwaqar8164]

You will recover soon god bless you and all

[@vaishaligarg4125]

Hope for your recovery. I have a 5yrs old kid in my family, who has recently come across this disease. He is on ventilator since last 20 days, just wanted to know if this happens in the initial days ?

[@vaishaligarg4125]

He is done with all the plasma therapies and steroids but still he has 0% improvement.. And is on complete ventilator requirement., please help if this is the case even after all the treatments in the initial month ?

[@Sun_Sunnie]

@@vaishaligarg4125 first two months was the most difficult. I undergone different examinations and taken too many meds. But i never experienced in the ventilator. Maybe because he’s too young. I was 16 when I experienced it .

[@vaishaligarg4125]

@@Sun_Sunnie thanks for your reply, and how much time after plasma therapy you were able to start recovering ?

[@qwertyuiopasdfghjkl9879]

It sucks that Joey Jordison had this rip legend

[@F4LL3NN3LL4F]

Rip Joey jordison

[@joseelevasseur2359]

I have it since 1986!

[@havanadaurcy1321]

I knew a kid with it and polio at the same time. I believe he was the first child in Australia breaking the gap of 25 years. 1994/1995

[@joseelevasseur2359]

@@havanadaurcy1321 you know it's really a terrible thing to never be able to run again in this lifetime! Vraiment pas drôle. Salutation du Canada!

[@junix1784]

This kind of illnes happen to u in a poor country and not so much advance in medicalcare ir what ever advance... and u dont have that much money to go to a good hospital that know how to cure it i say ur much in a big trouble...and thats what happen to me..and now i am 17 years in a wheelchair never ger fully recovered..but its ok i accept it.. life must not stop there...just be positive and never quit in life keep fighting... Until wer it ends..and never stop believing in Gods plan.

[@rainbow-kz5rm]

Hi.my friends sick.she is transvers miyelits.plesae help us.I want to dialog about this sick.thank you so much

[@jimgiraffe5253]

its caused by your dentist - get all silver fillings removed by a dentist with proper facilities. Mercury in the fillings is killing her immune system.

[@happyanne555]

I got it after root canal.....

[@charissasmith999]

Hey I was just diagnosed and im 12

[@jimgiraffe5253]

how many fillings have you got?

[@charissasmith999]

about 2 or 3)

[@jimgiraffe5253]

you need to get them removed. especially is they are silver in colour or if it's a root canal filling. silver fillings are 50% mercury and root canals are ground zero for infection. your Dentist made you sick. mercury is highly Neuro toxic.

[@abbyrout1658]

I’ve been fighting for nearly 12 years I was paralysed from neck. Now it’s one sided no use of my left hand and left leg has mind of its own I’ve always said I was the greedy one normally it’s one or the other 😂

[@skyjericho9724]

My mom has been paralyzed from the neck down for almost 2 years now. What did you do to regain the function and half your body?

[@haleybass1734]

I’ve had it twice,at age 6 and 13...

[@kwaqar8164]

Did you fully recovered???

[@SarangaWijerathna]

I had it

[@isanelceron7083]

I have it

[@queenme8666]

Gws

[@caseyperez2110]

I have it👎