Thank you for this video! My story is different. I was completely out of it and incoherent and that is what got me to the hospital. I did lose my hearing in one ear. I do feel alone in this. I don't even know how to begin to explain what this disease did to my life. It's almost a year now and I'm still having symptoms of traumatic brain injury. I lost a significant portion of my memory and don't have the same capacity for stimulation or mental/cognitive activity. I'm still fatigued all the time. I do see improvement in some areas (balance, driving, physical strength) but I am frustrated by how slow it is. How are you doing now years later? I'm on cellcept and prednisone hoping to be off the prednisone soon. (it's almost a year!). Are you still on medication? Do you have any lasting physical or cognitive issues? Thank you again!
What a difficult journey, it sounds so scary and Im so impressed with the way you and your parents tackled it together until you got to the bottom of it. Thank you for sharing, I'm sure anyone going through this right now would be so relieved to hear your story!
Hello Alisha, I was so fortunate to see your video. My son was just diagnosed with this and your story is helping me understand his position. Your symptoms are just the same. I am really scared as we are literally just starting this journey. Can you tell me the name of the doctor you mentioned at Cleveland Clinic? Please post more videos as you go through this. How your day to day living is being affected.. Thank you so much for going out there to help others with this disease.
Hi Lisa, thank you for your comment. I was feeling like I wasn’t reaching anyone and there was no point but you’re inspiring me to keep going. I am happy to jump on a call and share any bit of knowledge that could help your son. Find me on Instagram at Alisha dosani or contact me on my blog at www.alishadoes.com.
Thank you so much for making this video and sharing your story. My husband was diagnosed with Susac's Syndrome in August after suffering from vision loss and repeated strokes. It's been really scary, but we're receiving good treatment for him from the Mayo Clinic now. He's on CellCept and steroids, but they're hesitant to try IVIG for insurance reasons (they feel like insurance might deny to cover it), but I'm really interested in trying to get him set up with that since it does seem like others have success with it. I'd be really curious to learn more about your experience specifically with IVIG, and why/how the doctors decided to prescribe that for you. Are you still having Susac episodes, or is the IVIG treatment helping to stop that? And are you still getting IVIG every month? I'm also curious about what the long term picture of this disease is like. We're guessing that my husband will need some kind of medication for the rest of his life to keep things at bay. Is the same true for you, or do your doctors feel like there's an end in sight? Thank you again for sharing your story. It's sad to know that others are also going through this, but I'm grateful for those who share their knowledge and experience with those of us who are at the beginning of this journey.
Hi Ashley, I would love to answer all of these questions and will make another video just about IVIG and how it allowed me to heal. I highly recommend it!
Hello, Alisha. Thank you for sharing such rare and such important information. My friend barely survived because she was first diagnosed with multiple sclerosis and treated according to the diagnosis. But it only got worse and she nearly died. As a result, she was diagnosed with Susak's syndrome and began treatment, and she felt better, but she is far from a normal life. She has difficulty walking and does not speak well. She was prescribed some exercises to restore brain function and coordination, which she does with her family. I would like to ask you, what could you advise me, a simple friend of this girl, how can I help her? Is there anything you could recommend based on your experience? Thank you
hi, I am so sorry to hear this about your friend and I know exactly how she must be feeling. A lot of people said their doctors first diagnose susacs syndrome as multiple sclerosis or even lupus. Difficulty walking or even speaking is so common and I experienced that for many months when I was first diagnosed. I am so sorry I have not been able to post more videos yet but I would like to start again soon. I would advise your friend that a clean diet will help a lot. Cut down on sugar, additives, and processed foods. The diet should primarily consist of healthy fats like avocados, fruits, nuts etc and ORGANIC is very important if at all possible. IVIG helped a lot if you can get your insurance to cover or help pay for that and meditating. you create your destiny so visualize FEELING better, walking normally, hanging out with friends, driving, etc.
@@alishadosani I passed all the information to my friend's mom and she is very grateful to you! There was so much hope in her voice! She asked me to ask you a few things that she is very worried about. How long after the start of treatment did you feel better and when were you able to return to normal life? Did your symptoms recur after treatment? And could you tell me how to contact a doctor who has been researching Susak's syndrome all his life? Thank you so much, we are so glad we found you and your video! You are the only one who spoke about your experience with the disease. I would like to make the same video, my girlfriend will get better, because information about this should be available to everyone
Thank you for this video! My story is different. I was completely out of it and incoherent and that is what got me to the hospital. I did lose my hearing in one ear. I do feel alone in this. I don't even know how to begin to explain what this disease did to my life. It's almost a year now and I'm still having symptoms of traumatic brain injury. I lost a significant portion of my memory and don't have the same capacity for stimulation or mental/cognitive activity. I'm still fatigued all the time. I do see improvement in some areas (balance, driving, physical strength) but I am frustrated by how slow it is. How are you doing now years later?
I'm on cellcept and prednisone hoping to be off the prednisone soon. (it's almost a year!). Are you still on medication? Do you have any lasting physical or cognitive issues? Thank you again!
Proud of you for sharing this with the world 👏🏼
Thank you! I hope someone will find the information useful!
What a difficult journey, it sounds so scary and Im so impressed with the way you and your parents tackled it together until you got to the bottom of it. Thank you for sharing, I'm sure anyone going through this right now would be so relieved to hear your story!
Creative Edge Travel I hope so! I know it was scary trying to navigate it so hopefully it can provide insight to others! :)
Hello Alisha, I was so fortunate to see your video. My son was just diagnosed with this and your story is helping me understand his position. Your symptoms are just the same. I am really scared as we are literally just starting this journey. Can you tell me the name of the doctor you mentioned at Cleveland Clinic? Please post more videos as you go through this. How your day to day living is being affected.. Thank you so much for going out there to help others with this disease.
Hi Lisa, thank you for your comment. I was feeling like I wasn’t reaching anyone and there was no point but you’re inspiring me to keep going. I am happy to jump on a call and share any bit of knowledge that could help your son. Find me on Instagram at Alisha dosani or contact me on my blog at www.alishadoes.com.
Do recall what your protein level was?
Wow, you are a warrior! impressive all you have accomplished; and how you are such a joyful and pleasant being. ✌🏽
thanks Jose! I am lucky to have gotten better as quickly as I did! Thank you for taking the time to watch!
Thank you so much for making this video and sharing your story. My husband was diagnosed with Susac's Syndrome in August after suffering from vision loss and repeated strokes. It's been really scary, but we're receiving good treatment for him from the Mayo Clinic now. He's on CellCept and steroids, but they're hesitant to try IVIG for insurance reasons (they feel like insurance might deny to cover it), but I'm really interested in trying to get him set up with that since it does seem like others have success with it. I'd be really curious to learn more about your experience specifically with IVIG, and why/how the doctors decided to prescribe that for you. Are you still having Susac episodes, or is the IVIG treatment helping to stop that? And are you still getting IVIG every month?
I'm also curious about what the long term picture of this disease is like. We're guessing that my husband will need some kind of medication for the rest of his life to keep things at bay. Is the same true for you, or do your doctors feel like there's an end in sight? Thank you again for sharing your story. It's sad to know that others are also going through this, but I'm grateful for those who share their knowledge and experience with those of us who are at the beginning of this journey.
Hi Ashley,
I would love to answer all of these questions and will make another video just about IVIG and how it allowed me to heal. I highly recommend it!
@@alishadosani Thank you so much, Alisha! I've subscribed, so I'll keep an eye out for that video someday. :-) Looking forward to learning more!
Hello, Alisha. Thank you for sharing such rare and such important information. My friend barely survived because she was first diagnosed with multiple sclerosis and treated according to the diagnosis. But it only got worse and she nearly died. As a result, she was diagnosed with Susak's syndrome and began treatment, and she felt better, but she is far from a normal life. She has difficulty walking and does not speak well. She was prescribed some exercises to restore brain function and coordination, which she does with her family.
I would like to ask you, what could you advise me, a simple friend of this girl, how can I help her? Is there anything you could recommend based on your experience?
Thank you
hi, I am so sorry to hear this about your friend and
I know exactly how she must be feeling. A lot of people said their doctors first diagnose susacs syndrome as multiple sclerosis or even lupus. Difficulty walking or even speaking is so common and I experienced that for many months when I was first diagnosed. I am so sorry I have not been able to post more videos yet but I would like to start again soon. I would advise your friend that a clean diet will help a lot. Cut down on sugar, additives, and processed foods. The diet should primarily consist of healthy fats like avocados, fruits, nuts etc and ORGANIC is very important if at all possible. IVIG helped a lot if you can get your insurance to cover or help pay for that and meditating. you create your destiny so visualize FEELING better, walking normally, hanging out with friends, driving, etc.
@@alishadosani Thank you so much
@@alishadosani I passed all the information to my friend's mom and she is very grateful to you! There was so much hope in her voice! She asked me to ask you a few things that she is very worried about. How long after the start of treatment did you feel better and when were you able to return to normal life? Did your symptoms recur after treatment? And could you tell me how to contact a doctor who has been researching Susak's syndrome all his life?
Thank you so much, we are so glad we found you and your video! You are the only one who spoke about your experience with the disease.
I would like to make the same video, my girlfriend will get better, because information about this should be available to everyone