Diagnosed with TRANSVERSE MYELITIS?! - Scott's Story #2

[@MyMyelitis]

Please remember to like and subscribe if you enjoyed the video!

[@abelinatownes8160]

I’m glad you were taken seriously. I presented with symptoms matching the classic definition of cervical central cord syndrome, but was asked if I was under stress and told to go home, and denied even a trial of steroids because the Doctor didn’t think it was necessary. Also - I am an RN who works at that same hospital and this is how I was treated

[@MyMyelitis]

Sorry to hear about that Abelina. I think I was lucky I went when I did. I'm not sure it would have been picked up if I had gone any sooner. I hope you were able to get treatment soon after

[@mrj3217]

Hi, I had back pain for years caused by a spinal stenosis according to the Pain Management Dr. So eventually I got off the meds, but I had severe back pain and eventually had a lumbar laminectomy, this did not really relieve the symptoms. Then about 3 months later I began to experience extreme drop foot/R leg not and saw my ortho with in 2 weeks. Well with in 2 and 1/2 months I progressively lost more and more of my feeling in my lower half waist/ midback down. With in that time I became paralized and couldn't use the bathroom and push until I was bursting. I saw my Orthopedic 3 other times as I got worse each time and he only sent me for a EMG R leg nerve test which was 2 months out at the earliest. Eventually he sent me to the ER to get a MRI and they immediately sent me to surgery for a upper laminectomy of the T section + and they said to remove tissue to releive the pressure due to a abscess. But the ER surgeon told me they would cut out the infection/abscess and take cultures of this so we know the way to treat it and know where it comes from. But they never did, claiming the hospital lost it.????? I never tested prior for any infection. My BP wemt up, vision issues, partial paralyzation in legs, feet, no balance, I have a hard time using the Bathroom 1&2. Is this possibly what you have and I was misdiagnosed? I still have better days than others but I cant even swim in a pool. My life is very much permanently altered. I am 43 stuck on SSI and I need to use a cane now. Thankfully I can carefully walk but very carefully. Just asking, how can I get tested for this? Autoneumatic neuropathy is what I thought I have now. I have crazy sweating and heat Sensitivity, now the bathroom issues the vision issues the higher Blood Pressure. That i've never had in my life and burning pain here and there on top of numb dead parts of my body.

[@MyMyelitis]

Hi, thank you for your comment. I have now been diagnosed with MOG Antibody Disease which is when the immune system attacks the nervous system. I believe spinal stenosis is physical pressure that causes nerve issues whereas MOGAD is antibodies attacking the nerves. Currently there are three main methods to diagnosed MOGAD. I’ve written about them here if you want to know more- mymyelitis.com/mog-antibody-disease/information/ Some of the symptoms you mentioned can happen in MOGAD and other neurological conditions so it might be worth investigating further.

[@markthrasher9969]

This is so similar to what happened to me in 2009. I had vision issues, headache, vomiting, lost the ability to walk, lost the ability to urinate. At that time MOGAD wasn't even a known disease. They ended up diagnosing me with Multiple Sclerosis. I started on Glatiramer Acetate and steroids for the relapses. It took a while but Glatiramer Acetate has stabilized me. If you think about it Glatiramer Acetate is a synthetic MOG analog so it's kind of like an alergy shot that requires time to sensitize your body to MOG. I've permanently lost the ability to urinate and have bowel and ED but am stable and haven't had a relapse in about 6 years. I just found out about this disease but I think I'm going to stay the course with Glatiramer Acetate as it is working for me. Best of luck to you.

[@MyMyelitis]

Hi Mark, I'm sorry to hear about your diagnosis. It sounds like Glatiramer Acetate is working for you and hopefully you manage to stay relapse free in future. Best of luck to you too!

[@BernadetteDevlin-l6w]

Very well spoken ❤️😘

[@MyMyelitis]

Thank you for the kind comment. I hope you found the video useful

[@austinallen1797]

a 16 year old that i know has acute flaccid myelitis. He was coming to the gym with me before it struck him. Everyone is devastated. Hes paralyzed

[@KS-xg9ht]

Get well soon buddy, no matter who you are take care

[@MyMyelitis]

Thanks, I hope you’re doing well too

[@stephenwarren5517]

Yes I had Transverse Myelitis in 2010. I had a very similar story. The only thing different was they sent me home from Hospital the first day than the next day I could not walk. So an Ambulance had to come and get me. My first indication I had a problem was I could not urinate. Steroids did the trick and after 10 days I went home. In the Hospital as soon as I could walk I was walking around the ward to get my legs moving. I am one of the lucky ones. I live Sydney Australia.

[@MyMyelitis]

Sorry to hear about your Transverse Myelitis Stephen. I hope everything is okay now? Exercise has had the biggest impact outside of treatment to help me recover and I’m glad it helped you too!

[@suziegau2245]

Subscribed. Thank you for sharing your story. Almost similar to mine.

[@MyMyelitis]

Thank you! I'm glad you enjoyed it and hope your recovered well :)

[@joekennington3865]

Thank you for your story. I have Transverse Myelitis as a result of my immune system attacking my nerves after having the Astrazeneca vaccine. I took a while to diagnose and I spent four weeks in hospital with similar experiences as you. This was June last year during lockdown. I was very lucky to be on a ward that allowed one visitor. I did receive any physio, I had a test on the fourth week to see if I could go up and down stairs. I was able to do this so I was discharged from the hospital soon after. A year down the line and I'm still recovering because the nerves are so slow to heal. I hope your recovery is going well. Good luck and best wishes to you.

[@MyMyelitis]

Hi Joe, thanks for your comment. I remember hearing about TM caused by the AZ vaccine. I believe my condition was caused by the virus due to the timing but I didn’t have any symptoms and have been unable to prove it. Recovery definitely takes a long time, whilst I’ve improved a lot I still have issues now 2 years on. Physical therapy is what I believed helped the most so that what I would recommend. Good luck with your recovery too!

[@dahliasmith4469]

How do know that's what cause it?

[@joekennington3865]

@@dahliasmith4469 Hi, based on what I was told by the neurologist at John Radcliffe Hospital. She said that in all likelihood, the vaccine triggered my immune system to kick in and with that the MOG antibodies laid into my nerves. Anything that triggers my immune system had the potential to cause it, so it could have been a flu jab or just catching the flu. Astrazeneca just got there first. That makes sense to me but I still harbour suspicions about the Astrazeneca vaccine. The big question is, how did my immune system develop the MOG antibodies in the first place?

[@dahliasmith4469]

@@joekennington3865 Good question

[@queenme8666]

Get well soon.

[@MyMyelitis]

Thank you for your message, I’ve definitely improved since this video was made! :)

[@queenme8666]

@@MyMyelitis we just found out my son has this. He’s been in the hospital since last Wednesday. He’s really improving quickly except for his toes thus far. You should look into chamomile, sea moss and black seed oil. I’m glad you’re doing better and I wish you a full recovery young man. You got it! ❤️

[@MyMyelitis]

@@queenme8666 Sorry to hear about your son! Sounds like his recovery is going well, it took me a while to get sensation back to my lower body. If they have not already I would get the hospital to check for MOG or AQP4 antibodies to see if MOGAD or NMOSD caused it. I'll take a look into those and I wish you and your son the best in the future!

[@andresbosso6834]

Hi Scott, Andrés from Argentina ... have you got an email where to reach you and chat ? All the best !

[@MyMyelitis]

Hey Andrés, I hope you're well. You can find my contact information here on my website - mymyelitis.com/contact/

[@jay22098]

shit. this is exactly what is happening to me

[@arshad3588]

How much time it will take to bledder recovery

[@MyMyelitis]

Bladder recovery seems to be one of the areas which takes the longest to recover. I’m still seeing improvements 3 years on but it’s still not quite back to normal. Are you having bladder issues?

[@RituBansal-e6g]

Hi bro i m fighting with this ddisease since may 2021. Is there any treatment and medicine for this .will u help me please

[@MyMyelitis]

Hi, I’m sorry to hear about that. I can’t give any recommendations for treatment but I do have an information page about TM on my website here - mymyelitis.com/transverse-myelitis/

[@RituBansal-e6g]

@@MyMyelitis thank you very much for reply

[@alsad8229]

Need captions for every video. Thanks in advance.

[@MyMyelitis]

It takes some time for KZbin to autogenerate the subtitles. Once they are generated I will review and correct them if needed and let you know when it is done!

[@MyMyelitis]

Subtitles have now generated and have been review and corrected :)

[@alsad8229]

Fantastic. Good work.

[@sanyamehta6992]

@@MyMyelitis hi, can I talk to you? Need your help

[@MyMyelitis]

@@sanyamehta6992 Yes, you can email [e-mail] and I can respond there