Beautiful story ! Thanks to Francisco and his family for sharing their journey we us, Thanks to SRNA for all the wonderful work for 30 years! Gracias !

I guess when I hear these talks I feel jealous as 8 years in and I still have never met anyone else with TM . I did not receive any family support and was away from home and was staying with my mum who had dementia in Ireland. Still trying to get back to my home in NY

My brother has multiple slcrosis and a brain sugurey soon and im scared, if u care ill keep this comment updated

I have had TM for over 10 years. I am on Gabapentin and worry what's it's doing to my brain. I was on 12 a day but managed to reduce it to 8 a day.

I would love to talk to someone about my symptoms.

I have mogad. Not on any treatments. Woke up one day and couldn’t walk. Was placed on a low dosage of prednisone when I first tested positive. I feel horrible 24-7. Now my eyes are getting really bad and my brain feels really weird. My arms and legs feel numb. I have had several mris with negative results optic nerves/ brain, spinal cord. I’ve seen two separate neurologists where I live without any help I feel like. Is this how my life is going to be moving forward?

Core body temperature raises half a degree celsius and it causes all your MS symptoms to hit at once tenfold!! And even cause new symptoms!! Which aren't really knew they just weren't severe enough to notice!! 🤪💪

Thank you for this information, my hubby got effected by Anti mog, he took the steroids and injection of tocilizumba for 6 times, monthly period.. He got effected on his bladder, he has the numbness in the lower body , unable to manage stuffs.. so what will be the treatment for issue

Demyelination and inflammation really stink. So does the pain associated.

Plz find treatment 😔 😟 im sufffrom 3 years only 19 years old plz 😢😢

Sir I'm suffering from transverse myelitis from 3 years sir no cure my hand finger are wery week they not work properly when i hear about me my frinds ane insulting so find permanet treatment for transnerve mylathies please im 19 years old only plz.....my mind is telling to sucide.pls sir help......😢😢😢😢❤

If you have had optic neuritis with a relapse in one eye, can you get it in the other eye. So worried about this because even though my daughter was on mycophenolate she had a relapse in the same eye, now they have made her mycophenolate even stronger. Hopefully, it works even though it makes her really sick, I am just worried about her hood eye being attacked. In Brisbane Australia, there doesn't seem to be anyone to ask.

Wife has had had transverse myelitis for 14 yrs. Pain gotten worse over the years and all . Tried all meds Tramadol 300ER, Hydrocodine, gabapentin etc etc. Spinal cord stimulator didn't help . For past 2 years pain pump with Prialt ,Fentanyl and Clonidine. Hurts to walk and can't do much at all. Any ideas on new types of treatment ? Pain usually 6-8 with meds.

Just seeing this. I took ill with diagnosis of TM idiopathic whilst in Europe though had lived in upstate NY . My Lyme disease test was negative. I am also wondering if I was tested with right kit.

Thank you for the video! Could you please spell out the few options mentioned (around 22min) for the preventive treatments?

Se puede tener normalidad de los efiltres orina y anal. en pasiente supuesta mielitis. gracias

I am from Pakistan my 21 month old daughter, doctor diagnosis ADEM,sir please help me for best treatment.

Thanks

My dad was labeled with ADEM, but I honestly don't think that's what it actually was. He woke up paralyzed from the waist down. The first MRI showed a lesion on the C4. His whole spinal cord was inflamed. They started a steroid and plasmapheresis. After 2 rounds of plasmapheresis, the 2nd MRI showed the inflammation moved up into the cerebellum. He did not make it. They never found out what caused the lesion. I don't know. A part of me wants better answers.

What a brave lady

Can neuroscardosis be cured fully? Newly diagnosed 😮

That's a lie. But, thank you for saying something. This illness targets children ages 5 and 6, typically. And, onset is usually in Sept/Oct when children are going back to school. So. Show me what else we are doing differently to children ages 5 and 6 that could be causing this - other than "catching them up on their vaccines" (as my pediatrician joked about this). Thank you and have a nice day.

What is mog or maga

Do not believe this is unique to MS.I have TM and this totally describes my fatigue.

I have NMOSD and my medication is steriod cortecosteriod ,i just want to ask if Can I stop taking steriod at 5mg?

It means so much to find others with this disorder!

That was very uplifting ❤

My 4 year baby girl mog positive adem 😢😢😢😢😢...scend times

Can you provide shelter for me in your centre

CAR-T for Neuro Sarcoid?

My mom is currently having Mog her vision is 50 percent and her feets are having a burning sensation doctors are advising immuno suppresers what should i do plz reply

14:30

So frustrated as total lack of support or even acknowledgement of TM compared to that for individuals with MS. I live in Northern Ireland. Only affirmation that I have any struggle since diagnosis is from SRNA and online talks

What potassium supplement and dosage should it take.

Picture and outside?and inside vote out funding and services and business and IV bags and in hospital and but DR and MD and center and peace Gp the no matter powerful and no kill and for and cancer and can food and cancer and like can durking By law 💯 Bad Gp and milk 🥛

I went through the same journey! 2015-2016 How are you doing?

This is extremely helpful because I am dealing with this right now and the first thing that happed is all of these test have been ordered like echocardiogram, artery Doppler tests and MRI but nothing about corticosteroids! Thousands of dollars for tests that may not be needed should not be the first course of action according to all my research.

My 7 year old son has been suffering from ADEM for 2 years. If it's hot outside, it's hot, it's 26 degrees up, my son has a fever of 40 degrees. Only cold compresses from the freezer applied to the liver help. I react the same way to IVIG or steroids. Is there any cure for this? Antipyretics don't work, and my son also avoids the sun. He hides in the shade or in a house with air conditioning all summer and when he goes outside he immediately comes back with a fever and very bad mood

informative, impressive presentation

Thank you so much for this discussion

Gabapentine is the worse, suicide drug, for making pain worse and killing your brain EVER. 1st it had "a study group" of 24 days, for epilepse......THATS ALL....now its a street drug in the UK. 2nd GBPentine is peenys to manufacture...at walmart...they have a gallon container of pills for 15.00 ...SERIOUSLY....its a $$$$$ to big Pharma.....Tramadol that the liver makes naturally is not addictive and they class it "1" drug, because it works for pain.... ask any one that has real pain.... Those on the board are ingenuous and are like all the other "MEDICAL Industries Schell practitioners".

At nights I’m walk good like i was before years. But at afternoon I’m weak

Thankyou so much for such valuable information. I am in Australia with a 30yr old daughter who only recently was diagnosed with MOGAD. These seminars have helped me to understand what it is. I hope Australia is up to date with Medicene and information as you are in the US. ❤

Great job!

Hello, thank you for making this video, it helped me understand a bit more about MS. I was diagnosed with MS 2 months ago, and it was a pain in the arse to figure out what i had, i only had two flares, one was last year, that one basicly i woul have a spasm in my whole body in one side only, but i couldn't do mutch about it, it was like, literally every 2 to 5 minutes i would have a spasm in my body in one side for like 5 to 10 seconds. I was checked several times, did a bunch exams to everything, and well, everything was good and no one knew what i had, fast forward 1 month of half body spasms every 2 to 5 minutes and one day, i woke u and everything was fine. Just like that i had nothing. 1 year later i felt like the spasm were about to come back (I could feel them coming) and i was taking my driver's license, so i stopped my lessons and yeah, surely, they came back, full body spasms again, but on the other side of the body, i went to the emergency again but this time, after checking a bunch of stuff and everything was fine, one doctor asked for a MRI scan, and i went and did it, when i came back from it i heard another doctor saying maybe it would be better to do a lombar puncture to be sure and i turned around and was like "well, if you wanna do it right now go ahead since i'm feeling good at the moment." well, little did i know what that was, anyway, i find the MRI worst, although that was very painfull, anyway, i took corticosteroid for like 5 or 6 days, but man, this year was way worst then the year before, i couldn't do anything, could barely get up, i couldn't eat by myself, my speech failed me every couple minutes, i got EXTREMELY tired all the time, i couldn't even take a shower by myself, i could not do anything alone, had to ask my lovely wife to cut my food, my hand coordination was terrible, i wouldn't be able to type all this like i am doing, could not type on my phone, sometimes i was swallowing and i felt like, my tongue would push the food downwards but it was just stuck there because my muscles did not work, sometimes i wanted to get up but my legs didn't work, again, my leg muscles just did not work, i got fecal urgency, i got a slight urinary incontinency, it was just terrible, absolutly terrible, when i heat up a bit my vision got blurry and the spasm would come back with the speech problem, again, just terrible i am almost back to 100% again, but i realised that the vision in my right eye is bad, i think this will be permanent, but we will see how it goes, and honestly alot more. I am 30 years old by the way, and apparently this is a bit unusual, specially for my age. So yeah, just found out about this, apparently i have a pretty active case of MS, i am already on Ocrelizumab and yeah, i guess we will see how it goes, currently watching videos and learning about MS so, again, thank you.

I had this as a child thank you for sharing your findings

This is such helpful information! I've watched a couple of these videos from Dr. Levy, and it helps reinforce understanding about the disease for me. I'm a middle-aged female who was diagnosed in late 2020. Initially, it presented itself in my lower spine, resulting in not being able to urinate, extreme pain in my torso and lower body, and balance/lack of strength issues in my legs. I relapsed in February, 2022, and this time had issues with pain/vision issues. I've been on IVIG infusions for over a year w/no relapse. That said, it's hopeful that there are new clinical trials out for MOG patients, since IVIG is cost prohibitive.

I am very alone

Hi, I am from Australia, my daughter has MOG with optic neuritis, is she able to connect with You and the MOG project. Thank you, she is 30yrs old.

Could this be an issue in hereditary spastic paraplegia