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?
Hello, we're so sorry to hear about your diagnosis. You may be able to find care in your area using our Medical Professional Network: wearesrna.org/living-with-myelitis/medical-professional-network/. If there are not providers listed near you, we recommend seeing neurologists who specialize in multiple sclerosis (MS). There are long-term treatments that can help prevent relapses in MOGAD. You can learn more about them in this video: wearesrna.org/resources/the-latest-in-treatments-in-mogad-from-an-adult-and-pediatric-perspective/. Finally, if you are not a member of SRNA, please consider joining here: wearesrna.org/join/. Membership is completely free and allows you to stay up to date on the latest research, information, events, and news.
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.
Hi, we're so sorry to hear about your wife's diagnosis and ongoing issues with pain. The latest information and resources for pain management can be found in our Resource Library here: wearesrna.org/living-with-myelitis/resources/resource-library/?fwp_topics=neuropathic-pain. We recommend this video from our 2023 Symposium: wearesrna.org/resources/neuropathic-pain-research/. Also, please feel free to contact us at info@wearesrna.org, and we will try to direct you to helpful information and resources.
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.
Hello, we asked Dr. Sotirchos your question, and here is his response: "MOGAD can affect areas of the central nervous system that were not previously affected (so an eye that has not been previously affected, or the spinal cord in someone who previously had optic neuritis). In your area, I recommend that you pursue an appointment with Dr. Broadley (experts.griffith.edu.au/19029-simon-broadley) who is an expert in MOGAD/NMOSD and is located close to you." If you have any additional questions, please feel free to contact us at info@wearesrna.org.
Thank you so much for answering ❤ Simon Broadly isn't taking any new patients, so I am increasingly concerned as they don't answer their phones or email. 😢
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......😢😢😢😢❤
Hello, we're so sorry to hear about your diagnosis. You can find support resources on our website: wearesrna.org. Also, if you are experiencing suicidal thoughts, please call the National Suicide Hotline at 1-800-273-TALK (8255), or text Crisis Text Line by texting start to 741741. Please email us at info@wearesrna.org if you have any questions or would like to be directed to more resources.
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?
Hello, we're so sorry to hear about your diagnosis. You may be able to find care in your area using our Medical Professional Network: wearesrna.org/living-with-myelitis/medical-professional-network/. If there are not providers listed near you, we recommend seeing neurologists who specialize in multiple sclerosis (MS). There are long-term treatments that can help prevent relapses in MOGAD. You can learn more about them in this video: wearesrna.org/resources/the-latest-in-treatments-in-mogad-from-an-adult-and-pediatric-perspective/. Finally, if you are not a member of SRNA, please consider joining here: wearesrna.org/join/. Membership is completely free and allows you to stay up to date on the latest research, information, events, and news.
@@wearesrna thank you for the information I will definitely be using this.
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.
Hi, we're so sorry to hear about your wife's diagnosis and ongoing issues with pain. The latest information and resources for pain management can be found in our Resource Library here: wearesrna.org/living-with-myelitis/resources/resource-library/?fwp_topics=neuropathic-pain. We recommend this video from our 2023 Symposium: wearesrna.org/resources/neuropathic-pain-research/. Also, please feel free to contact us at info@wearesrna.org, and we will try to direct you to helpful information and resources.
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.
Hello, we asked Dr. Sotirchos your question, and here is his response: "MOGAD can affect areas of the central nervous system that were not previously affected (so an eye that has not been previously affected, or the spinal cord in someone who previously had optic neuritis). In your area, I recommend that you pursue an appointment with Dr. Broadley (experts.griffith.edu.au/19029-simon-broadley) who is an expert in MOGAD/NMOSD and is located close to you." If you have any additional questions, please feel free to contact us at info@wearesrna.org.
Thank you so much for answering ❤ Simon Broadly isn't taking any new patients, so I am increasingly concerned as they don't answer their phones or email. 😢
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......😢😢😢😢❤
Hello, we're so sorry to hear about your diagnosis. You can find support resources on our website: wearesrna.org. Also, if you are experiencing suicidal thoughts, please call the National Suicide Hotline at 1-800-273-TALK (8255), or text Crisis Text Line by texting start to 741741. Please email us at info@wearesrna.org if you have any questions or would like to be directed to more resources.