This answers so many questions but leaves so many more. My 1 year old was diagnosed in August scariest thing Iv ever seen. I hope there are more studies in toddlers as there is little to no information for any long term care
This solidified my opinion. I was diagnosed with RRMS in August after a 2 month episode of neurological symptoms. Strangely, these occurred a few weeks after I had an infection. It’s never sat well with me just how close they are. I was 20 at the time and I’m now 21. I have an appointment with a neurologist tomorrow and will be mentioning this - surely he’ll see the same connections!
Marius Radu hey! Sorry to hear your experiencing the same thing. I mentioned it to my neuro and he straight up laughed in my face. He refused to explore the possibility and refuses to acknowledge my other opinion that I might have had an episode of Clinically Isolated Syndrome. He’s very stubborn but I’ve decided not to go on any treatments at the moment so I’m only really seeing my neuro so that he can refer me for my annual MRI scans now. I hope you can tell someone your suspicions about ADEM and have them believe and acknowledge you. Hopefully whatever is going on it all turns out ok. I’ve been fine ever since *touch wood*
sbrodie99 I think we are in the same boat here. My first symptoms started in March 2019, after a prolonged viral infection. It all begin with numbness and tingling, involving mostly my arms. They lasted for about two-three months, and it was mostly affecting the right side of it ( I was unable to hold a pen in my right hand). But it got better gradually and decided to do an MRI, which indicated some brain lessions and my neurologist was eager to give me an MS diagnosis, without asking for prior blood work and w/o performing a spinal tap. Long story short, I kinda recovered and in 1 year and a half did not have any relapses or whatsoever. I think it might have been ADEM, but no one will ever believe me, since it is so uncommon among adults.
Marius Radu yeah - I had a small but prolonged infection and had vision probs to start with. Then I had numbness in my feet, leg and fingertips. Sounds like we’re both unfortunate in that we’re lumped in with the adults and not quite feeling we fit in that MS category.
sbrodie99 Definitely. It is good to finally encounter someone who has felt the same things as you did. I was starting to get crazy and I have searched for so many alternatives and this seems like the most plausible answer. But only time will tell in our case. Let’s hope it will be for the best.
I have ADEM from i was 32 am now 43...am not losing hope, but anyone here can help me ? i need to benefit from any treatment have been followed by other....Please
Hello, have you joined as a member of the TMA? We are a nonprofit dedicated to the support of children, adolescents, and adults with a spectrum of rare neuro-immune disorders including: ADEM, AFM, MOG antibody-associated disease, NMOSD, ON, and TM. You can join here: myelitis.org/join/. I also suggest Smart Patients, a moderated online health community where you can ask questions and speak with other people who have your same diagnosis. You can access Smart Patients here: www.smartpatients.com/partners/transverse-myelitis-association.
This happened to me, it sucks.
This answers so many questions but leaves so many more. My 1 year old was diagnosed in August scariest thing Iv ever seen. I hope there are more studies in toddlers as there is little to no information for any long term care
This solidified my opinion.
I was diagnosed with RRMS in August after a 2 month episode of neurological symptoms. Strangely, these occurred a few weeks after I had an infection. It’s never sat well with me just how close they are. I was 20 at the time and I’m now 21.
I have an appointment with a neurologist tomorrow and will be mentioning this - surely he’ll see the same connections!
Hey there, buddy. I am exactly in the same situation. Can you givd me more details about how it went?
Marius Radu hey! Sorry to hear your experiencing the same thing. I mentioned it to my neuro and he straight up laughed in my face. He refused to explore the possibility and refuses to acknowledge my other opinion that I might have had an episode of Clinically Isolated Syndrome. He’s very stubborn but I’ve decided not to go on any treatments at the moment so I’m only really seeing my neuro so that he can refer me for my annual MRI scans now. I hope you can tell someone your suspicions about ADEM and have them believe and acknowledge you. Hopefully whatever is going on it all turns out ok. I’ve been fine ever since *touch wood*
sbrodie99 I think we are in the same boat here. My first symptoms started in March 2019, after a prolonged viral infection. It all begin with numbness and tingling, involving mostly my arms. They lasted for about two-three months, and it was mostly affecting the right side of it ( I was unable to hold a pen in my right hand). But it got better gradually and decided to do an MRI, which indicated some brain lessions and my neurologist was eager to give me an MS diagnosis, without asking for prior blood work and w/o performing a spinal tap. Long story short, I kinda recovered and in 1 year and a half did not have any relapses or whatsoever. I think it might have been ADEM, but no one will ever believe me, since it is so uncommon among adults.
Marius Radu yeah - I had a small but prolonged infection and had vision probs to start with. Then I had numbness in my feet, leg and fingertips. Sounds like we’re both unfortunate in that we’re lumped in with the adults and not quite feeling we fit in that MS category.
sbrodie99 Definitely. It is good to finally encounter someone who has felt the same things as you did. I was starting to get crazy and I have searched for so many alternatives and this seems like the most plausible answer. But only time will tell in our case. Let’s hope it will be for the best.
I have ADEM from i was 32 am now 43...am not losing hope, but anyone here can help me ? i need to benefit from any treatment have been followed by other....Please
Hello, have you joined as a member of the TMA? We are a nonprofit dedicated to the support of children, adolescents, and adults with a spectrum of rare neuro-immune disorders including: ADEM, AFM, MOG antibody-associated disease, NMOSD, ON, and TM. You can join here: myelitis.org/join/. I also suggest Smart Patients, a moderated online health community where you can ask questions and speak with other people who have your same diagnosis. You can access Smart Patients here: www.smartpatients.com/partners/transverse-myelitis-association.
@@wearesrna my nephew is suffering from ADEM from last 5 years. He is now 13 years old. Will you please help us
@@SatyendraKumar-ie1bi Hi Satyendra, please email us at info@wearesrna.org and a member of our team will respond to you.
@@wearesrna i am diagnosed with ADEM at the age of 13 now I'm 23 i want to confirm that will it recover or not so could you plz help.
Prevedete na makedonski jazik nisto ne razbraf pozdrav od makedonija
Bjj