I'm going through my 6th episode of ON. I know exactly how you feel. In fact I have almost all of the same exact symptoms you are experiencing when you posted this. I sincerely pray you've gotten better and have found a diagnosis. This latest bout of ON has left me almost completely blind in my left eye. I know how hard it is. There's so much I can't do anymore physically. I used to hike, jog, run, see my friends, etc. I don't know how to cope. I'm on steroids and auto immune suppressants. I am still working with my drs in getting a proper diagnosis. Everything you are talking about and trying to explain with all the emotions behind it- I experience daily. Plus like you said dealing with all the different symptoms then adding all the side effects from steroids and other meds, It's a lot to go through and try to stay positive. I want to thank you for posting this and serving our country. Bless you. You gave me a sense of hope. I pray you are recovering and feeling more like yourself.
Dear Hannah, I just wanted to tell you that you are an amazing person. My son worked as a Marine in the presidential security and I am an Army’s wife. You story will help a lot of people and is helping me at this moment. According to the doctor, I am losing eyesight on one of my eyes. I’m having a lot of tests.MRI, more MRI and tests. But remember, be positive the mind has a power to heal and recover from any illness. Don’t let this stop your bright future. I’m writing my dissertation and I’m not a quiter and you are not as well. Be strong you are young and beautiful and long way to live. Remember God never, ever will leave you. Rosalie Bocelli
I am going through something very similar. Can’t put two thoughts together most days. Vertigo, loss of vision, shaky, swelling in optic nerve. It is so so frustrating. I am praying for you. Thank you for being strong.
Hanna, I just wanted to say thank you for posting this video. I think you helped me figure out what I have. For the longest time, I have been going through exactly what you have but wondered what is happening to my body. Chronic headaches, pain/pressure around my eyes, confused, feeling lightheaded and nauseous, major vision problem, random pains in my body, burning sensations on my feet / legs, etc. My doctors diagnosed me with anxiety but I knew it wasn't that. Just like you, I have been very healthy and active before all this and only thing I complained about was not making enough money prior to all this happening. Now, I just wish to be healthy again. Just want you to know how thankful I am that you had the courage to post this video. You're not alone either. Take care of yourself and be strong.
Girl i am going through the same thing. Its very hard especially being a full time student and driver. It has not only impacted me physically and financially but also mentally. I cant study nor work as i used to. I have constant severe migraine and fatigue in my eyes. Whenever i overwork my self i feel terrible/ crying all the time. Lets focus on our mental health first and i am sure we can overcome it. It something that we need to accept and live with.
Hanna I hope you are doing better and coping with your illness and getting the answers you need. Don't ever give up! It is frustrating when medical things happen and they do not have answers! Thank you for your service and for your determination in the face of difficulties! Hugs from Oregon!
Thanks for your story. I have had issues for many years and ERs and Drs. have told me a lot of stuff mostly stress, anxiety or depression and even that it is just dry eyes. My right eye is close enough to blind that Id rather it be blind, less aggravating. I have horrible pain behind the eyes. I have vertigo and fall a lot also, even when using a cane. I have numbness in my cheek, arm, hand and leg, my ears ring. ANYWAY, I am finally getting a MRI tomorrow but it is without contrast and not orbital, so I feel like it still may not catch the issue. I guess I will know in the next few days.. I hope you are doing well these days, I will check out your channel to see if there is an update.. God bless you and yours..
You’re not alone. I’m currently living with optic neuritis. All of the symptoms your saying is true of what I’m experiencing and it’s frustrating and depressing especially being far away from family and loved ones. Plus A lot of people don’t always understand it. I’ve spent nights crying and wanting to get back to the way things used to be. I’m wishing you the best honey! Keep your head up and know you’re not alone.
Thank you Hannah for sharing your story. I am.currently in the process of finding out what my health pathway is going to look like. I just cried today when I was given my diagnosis. Thanks again for sharing.
Oh Hanna, I cried watching this. My son is 11 years old and on April 1st he was admitted into hospital and they were thinking MS. Started him on 5 day high steroids as well but by day 2 he wasn't responding so they started plasma phressis. He regained all his vision. After loads of MRI's and MRA's and cat scans and blood work a month later he has been diagnosed with anti MOG related demyelinating disease and because of that he now has been diagnosed with optic neuritis as well. Our neurologist gave us warnings about all the stuff to look out for and it is all the stuff you are dealing with and the getting hot was a huge concern for him for my son since he plays baseball. I hope you have found some more answers on your situation. I am not trying to be pushy but you might want to bring up the name of my sons diagnosis because it is a fairly newer diagnosis in the medical field alot of people have been misdiagnosed with MS because this looks like it too. Sorry for the book I just wrote lol. I wish you the best and a great recovery 💕
Hii my name is Athira.am recently diagnosed with optic neuritis.my blood result came MOG POSITIVE.i had 10 gm steroid.Still I have blurry left eye vision.planning IMMUNOGLOBULIN infusion next week.am worried about vision.
Hey Hannah I’m a person dealing with MS I’ve had it since I was 8 years old I am declared legally blind but I am 23 about to be 24 I just wanna say you’re not alone love 💙🙏God bless you
Definitely praying for you Hanna!! Im in the infusion room now for my last steroid iv. I'm not getting much relief either. Also in my left eye! Stay positive!!You are not alone!!💌
I have similar symptoms, eye pain and disturbed vision, extreme fatigue, lots of pain, numbness and strange sensations, vertigo, confusion and severe memory problems. Its like multiple sclerosis but I don't have a diagnosis, no scars on MRI. I keep seeing the eye specialist every 6 months, he says he doesn't see signs of optic neuritis but is worried about retinal tear. I think it was caused by taking cipro, a fluoroquinolone antibiotic (also goes by Levaquin or Avelox). It does seem to act up when its warm as well. Fortunately for me, I haven't lost my vision, it just gets really bad from time to time. It really sucks to have your life so impacted, not being able to do the same things anymore, and all relationships and being able to work affected. Yeah totally sucks. My heart goes out to you. I pray you get answers and solutions and are able to do things you love and that make your life fulfilling. You're not alone. Thank you for wanting to serve your country, you're an amazing lady. And thank you for sharing your story. Much respect for you, God bless you Hanna.
My heart goes out to you, dear. I feel exactly the same way, you kind of have to go through the hoops in order to find anything but it takes so long and it's so frustrating. I sincrely appreciate the kind words. ❤️
Sweetie I just wanted to say that you are in my prayers! I've just been diagnosed with NMOSD this week after they finally found MOG antibodies in the last test. I'm 54 and I can't begin to imagine how difficult it must be to get such a life changing diagnoses at such a young age. Stay strong and again prayers🙏
I understand what you are going through, today I had a symptom where my left eye hurts when I move them. Searched the internet and you tube, and found your video. At the end of your vid even I had my eyes moist. You are really a brave girl and your vid inspired me to take things head on. I would wait for a day or two before going to a doc, come what may, I am no more scared. I pray for you to get well and feel better. They say, "When the going gets tough the tougher gets going", and I believe that you are the toughest among those tougher people.
Oh, hon. I'm so sorry all this is piling on you. :( Thank you for serving our country. I'm thankful for your sweet heart and great work ethic, too. Praying you get answers and relief very, very soon. Praying you soon don't feel alone, too. It can feel so very isolating to be that swamped with symptoms, pain, and decreased activity. I've been there. [hug]
Hi girl ...... I'm 50 this year .... I lost my dad then split up with a long term partner. I started suffering anxiety . then got optic nirisis . I went to Dr . they sent me to hospital . was given MRI . with consultation after saying . as long as I don't lose use of my limbs . there is nothing they can do . I have suffered since with stroke like symptoms , been took to hospital on numerous occasions . I was 31 when this all started . I still suffer with these symptoms. And know the struggle ... Take everyday as it comes ... Sending so much love sharon
hanna angel, ur not alone i have been throuw this and currently i lost my vision in my right eye and i am student almost lossing everything. Living it self is a victory do not forget
IM WITH YOU THATS WHY I TYPE IN BOLD TO MAKE OUT LETTERS! KEEP YOUR HEAD UP YOU ARE IN MY PRAYERS! I WAS IN HOSPITAL FOR MONTH AND WE MUST STAY STRONG!
My vision went bad after quantum Biofeedback session in October and I’m also dealing with a slew of health issues worst being my brain function along with severe pain and weird symptoms. My life has been a living nightmare and seems to get worst instead of better with each medication or treatment I try. Honestly I have no hope in doctors. It’s a lonely road as no one understands and I look ok on the outside. I am glad I came across your video but sorry to hear what happened to you and all the others. I was also very active and happy person before all this . I cry and get very sad to think how my life has changed forever. Thank you for sharing your story. I’m also in California and if you ever need someone to be an ear , I’m available. God bless you and I pray for your healing.
Hi girly! I was diagnosed with MS at eleven years old. My first attack left the whole right side of my body paralyzed. My last attack was in 2011, and that’s also when my eye sight was affected (O.N) I’ve been through 3 treatments that failed. I’ve been on retuxen for a few years now and it’s doing me good! My last relapse was in 2011 and I am so grateful. If you ever need a person to talk/vent to, I’m here! Feel feel to PM me so we can exchange numbers or emails. I know just what you’re going through, and it would be nice to have a friend that I can relate with! Stay strong! 😊
I hearing you many times I also suffered problem with eye nerves I visit lots of doctors but all says there is no medicine also this is with me when I born my spectacle power slowly increasing I am aware that once I may lost my vision Now I am in below 30 Sometimes life is like that I am OK with that and I take a promise to my self that I see the world till I lost my sight and I am never cry because no use for that
Hi, I was awoken one morning in 2000 in my Max prison cell to incontinence and the sudden loss to motor skills. I fell face first to the floor. An awareness came that my vision was closing off like the old black n white movies? I looked in the mirror n my right eye was just floating around as if the tethering nerves had been severed! Needless to say I was terrified! After 7 days when they finally took me to an outside hospital, they did the battery of tests like u mentioned? The MRI revealed a cystic mass behind my right eye non related. As u know, treatment is steroids. But they were concerned the mass would grow, so they chose to do nothing. I now have 20 400 vision. Sometimes I get those heat shimmer type symptoms in my right eye n I begin to panic n pray for God to not allow my sight to be taken. I want to thank u for ur generosity in sharing ur story. U gave me a gift of knowledge about potential treatments, but u have encouraged me to pursue help I had resigned myself to this optic burritos n the mass in my head. So thank u n I hope college is going great n your still serving our country, thanks 4 that too! My prayers n love r sent it way,john😇
My brother has the same experienced as yours, but his vision on his one eye is already loss. Its hard to search for a treatment here in the Philippines, that makes me sad. He told me that "I'm contented on what I have now".He dreamed to be a great mechanic and he's doing great working on it. We dream of having our own business so that he wouldn't have to apply. He's 20 and he is so young to be so positive. Both of you are amazing! Keep fighting! Please make more videos about your journey! Thank you for sharing your story
I feel I have this right now... I'm waiting to see the MS nurse next week but I'm scared as I've had this for a while now and I'm scared... I'm learning a lot about my condition now but I just really need to see a doctor... Roll on next week. This video is so sad 😔 I feel your pain.
Hey, I ran across your video and I must say, I am in your shoes. 2012 I got diagnosed with optic neuritis in the left eye... my vision didn’t respond to steroid treatment but it reduced the pain. It took 4 years to get back the vision I have now. I used to dance and party. My right eye I got optic neuritis right after I had my daughter... I went to undergrad with and optic neuritis diagnostics and now I’m in grad school with my right eye with optic neuritis... I have RRMS. Multiple sclerosis. Also have low Vitamin B12 and D. It’s not fun. If anything you can message me I’ll answer
Did you get normal vision back? I’ve had it now for a little over a month and it’s so scary. I can’t tell if it’s getting better day to day. I think it is but Idk if that’s just myself trying to be positive or not
Hi. It's been 3 months now I've been diagnosed with ON. My blood test report came out Anti-MOG positive. I can see up to 12 degrees. Right eye is affected more than the left one and progress is very slow. How long it will take to restore my vision. Please reply
@@KevinKeenoo Hey, so I am stable now compared to years ago. My left eye I was told I lost 20 percent of my nerve fibers which is why my color vision isn’t as bright as it used to be but I can see, and as far as my right side. I have 100% of my vision back… I was diagnosed with MS so I was taking a treatment called (vumerity) 2X a day. I stopped because currently I am pregnant with my 2nd child. I’m sorry I took so long to reply. :) hopefully this helps.
Thank you for this. While I don't have the amount of pain you have, I did just do 3 days of steroids in the hospital with no response physically. I'm going to talk to my doctor about what you went through
I’m so sorry I have optic neuritis from lupus and a lot of the same symptoms 😢 Botox has helped for the migraines and medical cannabis has been the only thing to help with the pain. It’s awful 😭 I’m a disabled RN. Sending you love and support 💜 I have ocular atrophy in both eyes 😔
@@KevinKeenoo yes I have had flares causing more damage and suffer chronic pain unfortunately. I take mychophenolate oral and also 6 month infusions of rituxan to hopefully keep it at bay now though.
@@hummingbirdenthusiast1481 I agree it is terrible. I have seen many people healed from steroids, but then they have to bear with side-effects. On the other hand, there is naturopathy treatment which seems to be effective as well through detoxification and proper eating.
Thank you for your service...I was recently diagnosed with MS and I have optic neuritis in both eyes. SHIT... It's only been 4 months but this disease is really changing me physically and mentally... Stay strong and I hope you get well
I have optic neuropathy and have had it almost all my life I am 2200 and my vision is and it's getting worse having real problems with it sorry you are having problems wish you well and you are in my prayers
@@rubycaskey7638 Thank you for your prayers. MS is a horrible disease. I had it for about 20 years without any symptoms. In 2019 MS hit me hard. After 2 weeks in the hospital I was officially diagnosed with a aggressive form of RRMS. I have had or have every MS symptom you can think of to some degree 😒. On the outside I look great but on this inside Im a mess. Right when I start to feel better for a couple months, The MS will act up just to remind me that I still have it. I hope you eventually get over your issues. You have my sympathy and I wish you the best of luck....🙏👍
@@Salvatore-1980 hi darling i really hope You're fine i just wanna ask you darling what's your treatment for ms and also at what age did you find out ms❤️:(
@@hananana3704 Hello...I doing well. I have my good and bad days. Thank you for you concern. To answer your question, After Being hospitalizedin 2019 at 38 years old due blurred vision,not being able to feel my left leg and not making sense when I talked. I also couldn't remember simple things like how to use a smartphone or what happened the day before. After all the different test to rule out a brain tumor, ALS, and all the other horrible things. It was confirmed that I had rrms...After a couple months of rehab and steroids, I was about 85-90% back to normal. On my first visit with my neurologist I was shown pictures of my MRI. And with all the lesions on my brain and spine it was speculated that I've possibly had MS since I was 20 but MS just waited to show its ugly head and hit me and hit me HARD. Now a days would never know that there was anything wrong with me... but those of us with MS know that's not true.... Oh....exercise, a healthy diet and my drug of choice is OCREVUS!!!! All the best of luck to you!!!🙏
Your video is so very inspiring! I am also a optic neuritis patient and has a multiple aculliosis i feel your pain. Im totally blind last 6months ago but after i get the ivig medicine may vission ack little by little but not as normal like before. I prayed for your healing and mine stay possitive in jesus name we all healed. ♥️
Just saw this video - Hanna how are you doing now? I feel so sad to see you in so much pain and being helpless but I know that you will get through this...if you ever want to talk feel free to reach out...I don't have the same illness as you but I have numerous other issues - including a brain tumour. You are in power not the disease...don't let this thing take control of you because you will get through this - your mind needs to be really strong right now. EFT, HTT, Mindfulness work on building your mental strength and continue to have faith. I pray that you get well soon. God bless you. x
I had an optic neuritis too..1m 53 with 5 kids..ur so lucky that u are goin to do ur medications..bcoz u are financially secured.unlike me my medications not continually do so..so i have to wait when will in goin to the doctor maybe i think when we get fund then we can move to do my medications..its hard but we have to face it..all we have to do is to pray to strengthen us..and live as we here on earth..god bless..
Hanna, I relate to you. I was crying all through your video as it was like listening to me. I was in the last 6mths of teaching degree and got eye pain, and within couple of hours I lost all my vision. Tried methpred and didn’t work, then had another attack 3wks later and lost the little sight that did come back. They tried everything but nothing worked including doing a optic nerve biopsy. I had the first 3yrs in out hospital every few months. But after having my twins it improved. But last two years have been bad. I get shocking pain now. I have the same exhaustion levels like you, and end up sleeping so much, or forget what I said in middle of sentence. I have same problem with heat. I’m weak so can’t do much, get shocking migraine, and now have low vitamin d and have broken both ankles over past few years. I’m on stupidmax, lyrica, and opioids. And have osteopenia because they just pumped me full of variety of steroids for first 12mths. I’ve had it for 10yrs now. And this past month has been a real struggle for me too. They have now found demyelination on my good side which is scaring me to death. They haven’t been able to find the cause so far for me, but they closest is NMOSD. But now with these mri changes it could be early detection of MS. So am freaking out. I’d love to connect with you, so will send this to your FB as well. Unfortunately I’m not in America but if you happy to have a friend in Australia to chat and vent with I’m all ears. Stay strong. It’s such a frustrating condition when you go from healthy to feeling like everything constantly goes wrong and they can’t work out the underlining cause. But having friends that get it, make life better. I have friends that are great supports, but there are many times when they just can’t understand what it’s like to feel like you could go blind at any point with no warning. Thanks for sharing you story. Hope to hear from you. Annika xx
My heart goes out to you. It's incredibly frustrating when you don't know the definitive cause or when there's no real reason "why". Did you finish your teaching degree? I haven't seen your message on Facebook, but I will check my other folder. Life has been chaotic lately. I really appreciate your kind words. ❤️ I don't want to make assumptions but I'm assuming that Australia's climate is very hot? How do you deal with that? I live in a hot climate at the moment, not really out of choice but its really hard to try to mitigate that.
I’m lucky that I’m at the bottom of Australia so we have hot summers (100-107) and cold winters (45-55deg) . So summer I’m ok providing I’m under my aircon and not outside too long. We also get breaks from the heat. We will have 3-5days in a row building up to around 105d then have a cold change through for a few days then it builds up again. I always seem to get more attacks in the summer, esp around March after having a few months of constant heat. I get Uhthoff disorder too, where my ON is much worse with heat. So I can’t have long hot showers etc. I’ll try sending this to your fb or messenger again. Look out for it. That way we can chat with more personal details. I’m also part of a ON fb support group which is awesome. I’ve made a few great supportive friends. A few are in the states. I can share that with you as well. I never fully finished my teaching. I got as far as finishing all the theory as I could do that over time, but I still had 4wk of practical to do, but my ON was really bad at that time and I couldn’t sustain full time work so 4wks full time teaching was impossible. I was top of my class so always have a welcome back but would need to redo everything, now it’s after 5yrs. I’ve tried a few times to work, but I’m too unreliable. So I do some photography work here n there. That’s about it. But last 18mths I’ve been bad too, so even that’s been on the back burner. How are you feeling lately?
I know this is really late but my son has had all same symptoms and he has been diagnosed with optic neuritis because of having anti MOG related demyelinating disease. It attacked his eyes which caused the optic neuritis. He is 11 years old and went completely blind in 2 weeks. I just wanted to let you know what he has so people can maybe get there doctors to test for it. Anti MOG related demyelinating disease responds well to IVIG worth a shot to talk to your neurologist about it. Hope this helped. 💕
Tia Im part of a fb group called CRION. There’s lots of people there who have NMOSD. Check it out!! I’ve made some awesome friends there. We all understand what we going through.
I totally feel your pain I'm in the early stages of trying to find out why I have blurry vision in my left eye I'm also so glad that I'm not the only one that's going crazy with this illness why does it take so long for them to figure out what is wrong with us I really appreciate your video and I will also praying for you
Are you recoverd now? Can you see all the things clearly and properly.my mother experiend bilateral mild papilitis .after steroidal medication she has blurred vision.now she is so discouraged and hopeless.
@@KevinKeenoo I am well now. I regained my vision and I don't have eye pain. I took a high dosage of steroids to treat it. Some colors are still washed out but I can't complain
This is exactly what I’m going through right now. I was just discharged after 6 days and diagnosed with Optic Neuritis OS and Lupus 😞 I hope you’re doing well now …
Hi Hanna, how are you? You are a very strong girl. I was proud of you. I have also been diagnosed with optic neuritis and am being treated with steroids. My vision went from 20/100 to 20/30, however I still see a lot of spots and I can't distinguish colors well. It's very distressing. It hurts. A hug from Brazil and I await your response. Hope you're okay, Hanna. You can give me hope for my improvement
@@pieck9964 Unfortunately it has not changed much. All colors seem faded, I see through a fog looks like. It's very weird. Accepting it all is difficult :(
@Hanna Spencer i will tell you for sure that you or others like us are not alone, yes i am also having NMOSD. I got it in october in 2017 and i was totally paralyse lower body and was unable to feel anything and cant even move also bladder and bowel stopped. i am on rituximab hoping not to get relapses again and i also know that their is no cure for NMO/NMOSD but i made my mind that if i or anyone can stop NMO/NMOSD then i wont let it to stop me in my life. I dont think about it and just move forward with it by letting myself understand inside that NMO is just a part of me so that help me a lot coming up from it mentally. I hope this may help you to over come it and just for a short motivation i will say to you that before we breakthrough in life we need to breakdown first so NMO/NMOSD breakdown us so its now our time to breakthrough. I know it will be hard socially, physically and mentally but i am telling you no matter what dont let NMO/NMOSD to be the deciding factor for your life you need to some how come up, motivate and breakthrough yourself to stand up and start living your life positively and happily like ever before... :) :D
I know your pain. I have cluster migraines and tmj. And fatigue is a big problem with alot of nuero problems. I know it's hard,try and stay strong. I'm praying for you.
Hey Hanna I have ON too m in the same NMOSD category and I have chronic migraines and fatigue is also my issue...also vertigo and everything u said...ur not alone..so dont feel that way...
thank you for making this video😭this made me 😭i was diagnosed with optic neuritis even though i was treated with IV steroids my eyesight it didn't respond to it😭😭😭i don't know what will happen to me now its so frustrating cause i can't drive,i can't work😭😭it's so devastating😭
I was just looking to see if there was anything that resembles my condition on here , and came across your channel - I hope you are feeling better now .
You're not alone I have promblems with my vision. I was diagnosed with same thing. It's a struggle with my vision to function. The headaches hurts and my left hand goes numb then goes goes back to normal. I to have to have a kat scan and to see if I have Ms. It's scary and makes me scared I have a daughter to take care of.
Hi Hanna I'm sorry for wat your going through I'm also in the Military and going through something similar the only thing that the eye Doctor gave me was eye drops, i started getting desperate and began doing Research and found that its Candida overgrowth good thing its curable, do your research. And taking Ibuprofen 800mg helps lower inflammation in the optic nerves...just saying... but don't take too much. Check yourself along for leaky gut. May GOD BLESS you.
Thank you for your video! It helped me. I have MS and optic neuritis. I have a lot of support but it is still hard. Hope you are hanging on there. I am on topamax too. This was a miracle drug for me. After 20 years of migraines.
I too am going through the same thing in my right eye after a loss of blood a month ago. Please if anyone can share some information that's helpful. You my sister will stay in my prayers.
Hanna, so sorry to hear what you've be going through. I have similar problems as you and having a terrible time with it too. I my vision problems are just part of an autoimmune encephalitis called DPPX. Tirefness, headache, left side and nerve problems. My antibodies messed up and on retuxamab and ivig too. Ask your neurologist to check autoimmune diseases... I feel miserable too... :-(
These symptoms are also very similar to sarcoidosis we have to ask ourselves what is it that is causing all of these strange neurological illnesses is it something in our food or environment or something else I hope this young lady has fully recovered and will let us know how she is doing
Hi Hanna, I just wanted to reach out and thank you for this video. You are not the only young person going through this, scared; I’m 22 and was going to be a teacher before I started to get debilitating migraines and optic neuritis. We still don’t know why, I get my MRI results back this week so fingers crossed it’s something treatable.
I wouldn't want my worst enemies to feel like you and I. As a veteran I hope to get this taken care of at Palo Alto. I'm scared too this has been third attack so far I thought it woul clear up faster but nope, it's painful just to move my eyes so hard to get the smallest task done. I'm scared too
In May of 2018 I was diagnosed with optic neuritis. To this day I am still suffering with the condition. It is difficult because we become prisoners in our own homes. But if we train ourselves and work very very hard at it we can find a new normal. For me the hardest part has been when people tell me I'm not really blind. Like fuck them. I am now legally blind, unable to work and struggling everyday. Prayer is the only thing that helps me through it all. I hope and pray your outcome will be better
Hello everyone and to Hannah, I hope everyone is doing fine and getting better! So I also have optic neuritis and am still in recovery. So what happened? Basically 5 months ago I was diagnosed with dengue so that was just dengue for about a week with a temperature of 40-41°c. We were expecting to be discharged after that week but on this 6th day of that week I noticed something changed with my vision. I told the doctor and he said maybe it was just because I was over sleeping. So we disregarded it but on the 7th day which is supposed to be our discharged day my eyes vision began to worsen. That time the doctor was alarmed and brought me to this area were they have my eyes checked i dont know where it was because I can no longer see properly and my eyes are not that good already at adjusting from light. When they checked it they found my nerves on both sides of the eyes to be inflamed. So they don't know what to do because usually what they do on optic neuritis alone they have this to be followed by steps on treating it, so they were giving us hopeless choices of which to choose. Because they dont know if this optic neuritis of mine is caused by the viral infection which they know how to treat it or caused by Dengue. They don't have any idea. But the doctor said that there's a big chance that it is caused because of dengue but they have no assurance at all. Until all doctors gathered together including my neurologist and they find my case very rare since in the Philippines there is no study about it. If there will be i might be the first one. So what choices they gave me us was whether to follow the treatment where they IV me with steroids or have it hel on itself.. but both choices were no guarantee of bringing back my vision. That was the hardest part. They didn't give false hope so they immediately told me the truth because also them they dont know what to do because doctors are only humans. U get what isay right so. We were scared at that time because everything was so abrupt. So we did go for the treatment and got my self in steroid for a month 5months ago and now im doing better. And still recovering. What's so hard about it before was that i was also an active person and i do lots of sports so it was very hard. But i realized about what God has done to me from the past. He has given me problems before that i was able to surpass and why should i fear this one. He has given me this challenge i know He's by my side. Keep fighting everyone!!! If u need someone to talk to feel free to pm me FB : Eyys Mark Goks facebook.com/acecgocotano
I hope you are doing better dear. I also have optic nerve damage due to upper cervical instability. If you can please get checked for that. I'm getting prolotherapy.
Hanna, your video made feel like I was with you. My husband is going through the same symptoms. It is heart breaking. I am so sorry for your vision loss. Could you please tell me your final diagnosis? Doctors are looking into NMO, MOG for my husband. Right now NO is telling him NAION with no treatment but his vision loss in left eye is chronic which is not typical of NAION. My husband has headache on left side of head every day.
How are you doing now? I have MS since 12 years now and a vision of 20/200. Im from Germany and you are declared legally blind there at 20/400. I also get Rituximab but nothing else besides a ton of supplements. I'm still active, riding my bike, finished university as a computer scientist, have a little daughter now and beautiful wife. Always stay positive :) Life is good or can be good if you let it.
@@KevinKeenoo Your getting used to it. At least during the day. It just keeps me from sleeping. I dont want to take any Pain medicine anymore so im trying to get this under control with cannabis, which is actually pretty hard to get here in Germany. I only take it when my family sleeps, so i can sleep myself. If i dont have any. Sleeping and functioning normally is impossible. No sleep is destroying you.
@@jdraper23167 Does it pain when you move your eyes ? Are you able to lead a normal life? I mean, I hope it’s not affecting your work. How many pain killers do you take daily ?
Stay strong girl! That is so traumatizing to go though. Hope you feel better now🙏 I have ms and I found it out by optic neuritis. It pretty much sucks :( I'm so sorry you had to go through this. My vision is back but who knows when I'll have another attack. Are you feeling better now? Wish you the best
I am diagnosed optic neuritis 2 month ago during my exam. Am right eye was 20/15 but with in 10 days i scored 20/40. My doctor gave me 5 days of methylprednisolone 1000mg. . After thus my vision gets better i scored now 20/20. Alhamdulillah. But i can't see coloures diply. 😢....... I hope that allah repair you
I'm going through my 6th episode of ON. I know exactly how you feel. In fact I have almost all of the same exact symptoms you are experiencing when you posted this. I sincerely pray you've gotten better and have found a diagnosis. This latest bout of ON has left me almost completely blind in my left eye. I know how hard it is. There's so much I can't do anymore physically. I used to hike, jog, run, see my friends, etc. I don't know how to cope. I'm on steroids and auto immune suppressants. I am still working with my drs in getting a proper diagnosis. Everything you are talking about and trying to explain with all the emotions behind it- I experience daily. Plus like you said dealing with all the different symptoms then adding all the side effects from steroids and other meds, It's a lot to go through and try to stay positive. I want to thank you for posting this and serving our country. Bless you. You gave me a sense of hope. I pray you are recovering and feeling more like yourself.
Hi Melissa, how are you doing now? My mom just got this
I currently have optic neuritis right now. Your story made me cry bc I feel the exact same way. 🙏
Has it gone better now ?
how you are now.
I was just diagnosed
Dear Hannah, I just wanted to tell you that you are an amazing person. My son worked as a Marine in the presidential security and I am an Army’s wife. You story will help a lot of people and is helping me at this moment. According to the doctor, I am losing eyesight on one of my eyes. I’m having a lot of tests.MRI, more MRI and tests. But remember, be positive the mind has a power to heal and recover from any illness. Don’t let this stop your bright future. I’m writing my dissertation and I’m not a quiter and you are not as well. Be strong you are young and beautiful and long way to live. Remember God never, ever will leave you.
Rosalie Bocelli
I am going through something very similar. Can’t put two thoughts together most days. Vertigo, loss of vision, shaky, swelling in optic nerve. It is so so frustrating. I am praying for you. Thank you for being strong.
Is she ok??
Hanna, I just wanted to say thank you for posting this video. I think you helped me figure out what I have. For the longest time, I have been going through exactly what you have but wondered what is happening to my body. Chronic headaches, pain/pressure around my eyes, confused, feeling lightheaded and nauseous, major vision problem, random pains in my body, burning sensations on my feet / legs, etc. My doctors diagnosed me with anxiety but I knew it wasn't that. Just like you, I have been very healthy and active before all this and only thing I complained about was not making enough money prior to all this happening. Now, I just wish to be healthy again. Just want you to know how thankful I am that you had the courage to post this video. You're not alone either. Take care of yourself and be strong.
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
Girl i am going through the same thing. Its very hard especially being a full time student and driver. It has not only impacted me physically and financially but also mentally. I cant study nor work as i used to. I have constant severe migraine and fatigue in my eyes. Whenever i overwork my self i feel terrible/ crying all the time. Lets focus on our mental health first and i am sure we can overcome it. It something that we need to accept and live with.
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
Hanna I hope you are doing better and coping with your illness and getting the answers you need. Don't ever give up! It is frustrating when medical things happen and they do not have answers! Thank you for your service and for your determination in the face of difficulties! Hugs from Oregon!
Thanks for your story. I have had issues for many years and ERs and Drs. have told me a lot of stuff mostly stress, anxiety or depression and even that it is just dry eyes.
My right eye is close enough to blind that Id rather it be blind, less aggravating. I have horrible pain behind the eyes. I have vertigo and fall a lot also, even when using a cane. I have numbness in my cheek, arm, hand and leg, my ears ring. ANYWAY, I am finally getting a MRI tomorrow but it is without contrast and not orbital, so I feel like it still may not catch the issue. I guess I will know in the next few days.. I hope you are doing well these days, I will check out your channel to see if there is an update.. God bless you and yours..
Kudos lady! Amazed ! Time will heal it all !! You'll get better , just keep your hopes high .
My wife is also suffering with ON. I love her so much. We are fighting with this. Thanks for sharing your story. It really motivates us.
You’re not alone. I’m currently living with optic neuritis. All of the symptoms your saying is true of what I’m experiencing and it’s frustrating and depressing especially being far away from family and loved ones. Plus A lot of people don’t always understand it. I’ve spent nights crying and wanting to get back to the way things used to be. I’m wishing you the best honey! Keep your head up and know you’re not alone.
Dominique hello 👋🏽 just seeing your message. Can you inbox me detail on your condition? I have eye nerve swelling & idk what to do
Thank you Hannah for sharing your story. I am.currently in the process of finding out what my health pathway is going to look like. I just cried today when I was given my diagnosis. Thanks again for sharing.
Oh Hanna, I cried watching this. My son is 11 years old and on April 1st he was admitted into hospital and they were thinking MS. Started him on 5 day high steroids as well but by day 2 he wasn't responding so they started plasma phressis. He regained all his vision. After loads of MRI's and MRA's and cat scans and blood work a month later he has been diagnosed with anti MOG related demyelinating disease and because of that he now has been diagnosed with optic neuritis as well. Our neurologist gave us warnings about all the stuff to look out for and it is all the stuff you are dealing with and the getting hot was a huge concern for him for my son since he plays baseball. I hope you have found some more answers on your situation. I am not trying to be pushy but you might want to bring up the name of my sons diagnosis because it is a fairly newer diagnosis in the medical field alot of people have been misdiagnosed with MS because this looks like it too. Sorry for the book I just wrote lol. I wish you the best and a great recovery 💕
Hello give me a call 813-850-1521
Hii my name is Athira.am recently diagnosed with optic neuritis.my blood result came MOG POSITIVE.i had 10 gm steroid.Still I have blurry left eye vision.planning IMMUNOGLOBULIN infusion next week.am worried about vision.
Have faith Hanna. I am going through a similar situation for the past eight months. It’s terrible but God will heal me. I have faith.
Hey Hannah I’m a person dealing with MS I’ve had it since I was 8 years old I am declared legally blind but I am 23 about to be 24 I just wanna say you’re not alone love 💙🙏God bless you
Definitely praying for you Hanna!! Im in the infusion room now for my last steroid iv. I'm not getting much relief either. Also in my left eye! Stay positive!!You are not alone!!💌
I have similar symptoms, eye pain and disturbed vision, extreme fatigue, lots of pain, numbness and strange sensations, vertigo, confusion and severe memory problems. Its like multiple sclerosis but I don't have a diagnosis, no scars on MRI. I keep seeing the eye specialist every 6 months, he says he doesn't see signs of optic neuritis but is worried about retinal tear. I think it was caused by taking cipro, a fluoroquinolone antibiotic (also goes by Levaquin or Avelox). It does seem to act up when its warm as well. Fortunately for me, I haven't lost my vision, it just gets really bad from time to time. It really sucks to have your life so impacted, not being able to do the same things anymore, and all relationships and being able to work affected. Yeah totally sucks. My heart goes out to you. I pray you get answers and solutions and are able to do things you love and that make your life fulfilling. You're not alone. Thank you for wanting to serve your country, you're an amazing lady. And thank you for sharing your story. Much respect for you, God bless you Hanna.
My heart goes out to you, dear. I feel exactly the same way, you kind of have to go through the hoops in order to find anything but it takes so long and it's so frustrating. I sincrely appreciate the kind words. ❤️
How are you feeling now? I'm also having a bunch of symptoms for years which started after taking cipro.
Thank you for serving our country ❤️ so sorry to hear your struggling I pray you’ll get better 🤒❤️
Thank you for the kind words ❤️
@@hannaspencer6979 where's the Facebook info. Any updates?
Sweetie I just wanted to say that you are in my prayers! I've just been diagnosed with NMOSD this week after they finally found MOG antibodies in the last test. I'm 54 and I can't begin to imagine how difficult it must be to get such a life changing diagnoses at such a young age. Stay strong and again prayers🙏
My first symptom was optic neuritis! Such a scary thing!! I wish you well and I hope they get the treatment straightened out to help !
I understand what you are going through, today I had a symptom where my left eye hurts when I move them. Searched the internet and you tube, and found your video. At the end of your vid even I had my eyes moist. You are really a brave girl and your vid inspired me to take things head on. I would wait for a day or two before going to a doc, come what may, I am no more scared. I pray for you to get well and feel better. They say, "When the going gets tough the tougher gets going", and I believe that you are the toughest among those tougher people.
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
Oh, hon. I'm so sorry all this is piling on you. :( Thank you for serving our country. I'm thankful for your sweet heart and great work ethic, too. Praying you get answers and relief very, very soon. Praying you soon don't feel alone, too. It can feel so very isolating to be that swamped with symptoms, pain, and decreased activity. I've been there. [hug]
Thank you for the kind words. It means a lot to me. ❤️
Hi girl ...... I'm 50 this year .... I lost my dad then split up with a long term partner. I started suffering anxiety . then got optic nirisis . I went to Dr . they sent me to hospital . was given MRI . with consultation after saying . as long as I don't lose use of my limbs . there is nothing they can do . I have suffered since with stroke like symptoms , been took to hospital on numerous occasions . I was 31 when this all started . I still suffer with these symptoms. And know the struggle ... Take everyday as it comes ... Sending so much love sharon
Bless you Heart Beautiful. The Good Lord Loves you. Your gonna make it you'll be fine. I'm Praying and have Faith in you❤❤❤
Just went to the VA in Dallas experiencing some of the same problems. Stay strong you're definitely not alone.
hanna angel, ur not alone i have been throuw this and currently i lost my vision in my right eye and i am student almost lossing everything. Living it self is a victory do not forget
Im having some serious health problems i may have ms, colon cancer, or now this....i understand your pain...sending you a hug.
IM WITH YOU THATS WHY I TYPE IN BOLD TO MAKE OUT LETTERS! KEEP YOUR HEAD UP YOU ARE IN MY PRAYERS! I WAS IN HOSPITAL FOR MONTH AND WE MUST STAY STRONG!
You are a strong person, you are not alone
Thanks for sharing your story. Currently dealing with something like this.
My vision went bad after quantum Biofeedback session in October and I’m also dealing with a slew of health issues worst being my brain function along with severe pain and weird symptoms. My life has been a living nightmare and seems to get worst instead of better with each medication or treatment I try. Honestly I have no hope in doctors. It’s a lonely road as no one understands and I look ok on the outside. I am glad I came across your video but sorry to hear what happened to you and all the others. I was also very active and happy person before all this . I cry and get very sad to think how my life has changed forever. Thank you for sharing your story. I’m also in California and if you ever need someone to be an ear , I’m available. God bless you and I pray for your healing.
Stay strong girl .. I also suffered from Optic Nuritis which left slight damage to my left eye 😔
So sorry for what you going thru. I truly pray God heals you 💟🙏🏾 pray for healing and strength. ❤️💜
Hi girly!
I was diagnosed with MS at eleven years old. My first attack left the whole right side of my body paralyzed. My last attack was in 2011, and that’s also when my eye sight was affected (O.N) I’ve been through 3 treatments that failed. I’ve been on retuxen for a few years now and it’s doing me good! My last relapse was in 2011 and I am so grateful. If you ever need a person to talk/vent to, I’m here! Feel feel to PM me so we can exchange numbers or emails. I know just what you’re going through, and it would be nice to have a friend that I can relate with! Stay strong! 😊
Alexis Munoz have you been tested for NMO?
Hi girls.i lost my left eye in accident Nd now have optic neuritis in right eye.really it's very hard to live with such condition
I'm going through my 2nd optic neuritis attack im 34 i was diognosed with multiple sclerosis at 15 ur symptoms sound like ms
I'm felling I'm in agony
Hannah i have this for the past 8 years everyday stay strong girl ❤
I hearing you many times
I also suffered problem with eye nerves
I visit lots of doctors but all says there is no medicine also this is with me when I born my spectacle power slowly increasing
I am aware that once I may lost my vision
Now I am in below 30
Sometimes life is like that
I am OK with that and I take a promise to my self that I see the world till I lost my sight and I am never cry because no use for that
Hi, I was awoken one morning in 2000 in my Max prison cell to incontinence and the sudden loss to motor skills. I fell face first to the floor. An awareness came that my vision was closing off like the old black n white movies? I looked in the mirror n my right eye was just floating around as if the tethering nerves had been severed! Needless to say I was terrified! After 7 days when they finally took me to an outside hospital, they did the battery of tests like u mentioned? The MRI revealed a cystic mass behind my right eye non related. As u know, treatment is steroids. But they were concerned the mass would grow, so they chose to do nothing. I now have 20 400 vision. Sometimes I get those heat shimmer type symptoms in my right eye n I begin to panic n pray for God to not allow my sight to be taken. I want to thank u for ur generosity in sharing ur story. U gave me a gift of knowledge about potential treatments, but u have encouraged me to pursue help
I had resigned myself to this optic burritos n the mass in my head. So thank u n I hope college is going great n your still serving our country, thanks 4 that too! My prayers n love r sent it way,john😇
My brother has the same experienced as yours, but his vision on his one eye is already loss. Its hard to search for a treatment here in the Philippines, that makes me sad. He told me that "I'm contented on what I have now".He dreamed to be a great mechanic and he's doing great working on it. We dream of having our own business so that he wouldn't have to apply. He's 20 and he is so young to be so positive. Both of you are amazing! Keep fighting! Please make more videos about your journey! Thank you for sharing your story
I feel I have this right now... I'm waiting to see the MS nurse next week but I'm scared as I've had this for a while now and I'm scared... I'm learning a lot about my condition now but I just really need to see a doctor... Roll on next week. This video is so sad 😔 I feel your pain.
Hey, I ran across your video and I must say, I am in your shoes. 2012 I got diagnosed with optic neuritis in the left eye... my vision didn’t respond to steroid treatment but it reduced the pain. It took 4 years to get back the vision I have now. I used to dance and party. My right eye I got optic neuritis right after I had my daughter... I went to undergrad with and optic neuritis diagnostics and now I’m in grad school with my right eye with optic neuritis...
I have RRMS. Multiple sclerosis.
Also have low Vitamin B12 and D.
It’s not fun. If anything you can message me I’ll answer
Did you get normal vision back? I’ve had it now for a little over a month and it’s so scary. I can’t tell if it’s getting better day to day. I think it is but Idk if that’s just myself trying to be positive or not
Hi. It's been 3 months now I've been diagnosed with ON. My blood test report came out Anti-MOG positive. I can see up to 12 degrees. Right eye is affected more than the left one and progress is very slow. How long it will take to restore my vision. Please reply
Komal Singh in
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
@@KevinKeenoo Hey, so I am stable now compared to years ago. My left eye I was told I lost 20 percent of my nerve fibers which is why my color vision isn’t as bright as it used to be but I can see, and as far as my right side. I have 100% of my vision back… I was diagnosed with MS so I was taking a treatment called (vumerity) 2X a day. I stopped because currently I am pregnant with my 2nd child. I’m sorry I took so long to reply. :) hopefully this helps.
Thank you for this. While I don't have the amount of pain you have, I did just do 3 days of steroids in the hospital with no response physically. I'm going to talk to my doctor about what you went through
I’m so sorry I have optic neuritis from lupus and a lot of the same symptoms 😢 Botox has helped for the migraines and medical cannabis has been the only thing to help with the pain. It’s awful 😭 I’m a disabled RN. Sending you love and support 💜 I have ocular atrophy in both eyes 😔
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
@@KevinKeenoo yes I have had flares causing more damage and suffer chronic pain unfortunately. I take mychophenolate oral and also 6 month infusions of rituxan to hopefully keep it at bay now though.
@@hummingbirdenthusiast1481 I hope it works for you. I have discomfort and pain when moving my right eye to the edges.
@@KevinKeenoo it is the eye movement that causes the pain for me as well. I hope you find relief, it’s a terrible thing to have. I’m so sorry.
@@hummingbirdenthusiast1481 I agree it is terrible. I have seen many people healed from steroids, but then they have to bear with side-effects. On the other hand, there is naturopathy treatment which seems to be effective as well through detoxification and proper eating.
Thank you for your service...I was recently diagnosed with MS and I have optic neuritis in both eyes. SHIT... It's only been 4 months but this disease is really changing me physically and mentally...
Stay strong and I hope you get well
I have optic neuropathy and have had it almost all my life I am 2200 and my vision is and it's getting worse having real problems with it sorry you are having problems wish you well and you are in my prayers
@@rubycaskey7638 Thank you for your prayers. MS is a horrible disease. I had it for about 20 years without any symptoms. In 2019 MS hit me hard. After 2 weeks in the hospital I was officially diagnosed with a aggressive form of RRMS. I have had or have every MS symptom you can think of to some degree 😒. On the outside I look great but on this inside Im a mess. Right when I start to feel better for a couple months, The MS will act up just to remind me that I still have it.
I hope you eventually get over your issues. You have my sympathy and I wish you the best of luck....🙏👍
@@Salvatore-1980 hi darling i really hope You're fine i just wanna ask you darling what's your treatment for ms and also at what age did you find out ms❤️:(
@@hananana3704 Hello...I doing well. I have my good and bad days. Thank you for you concern. To answer your question, After Being hospitalizedin 2019 at 38 years old due blurred vision,not being able to feel my left leg and not making sense when I talked. I also couldn't remember simple things like how to use a smartphone or what happened the day before. After all the different test to rule out a brain tumor, ALS, and all the other horrible things. It was confirmed that I had rrms...After a couple months of rehab and steroids, I was about 85-90% back to normal.
On my first visit with my neurologist I was shown pictures of my MRI. And with all the lesions on my brain and spine it was speculated that I've possibly had MS since I was 20 but MS just waited to show its ugly head and hit me and hit me HARD.
Now a days would never know that there was anything wrong with me... but those of us with MS know that's not true....
Oh....exercise, a healthy diet and my drug of choice is OCREVUS!!!!
All the best of luck to you!!!🙏
Thank you for this information. Be Brave and Bless you.
Thank you for this, Hanna.
Your video is so very inspiring! I am also a optic neuritis patient and has a multiple aculliosis i feel your pain. Im totally blind last 6months ago but after i get the ivig medicine may vission ack little by little but not as normal like before. I prayed for your healing and mine stay possitive in jesus name we all healed. ♥️
Just saw this video - Hanna how are you doing now? I feel so sad to see you in so much pain and being helpless but I know that you will get through this...if you ever want to talk feel free to reach out...I don't have the same illness as you but I have numerous other issues - including a brain tumour. You are in power not the disease...don't let this thing take control of you because you will get through this - your mind needs to be really strong right now. EFT, HTT, Mindfulness work on building your mental strength and continue to have faith. I pray that you get well soon. God bless you. x
Praying for your well being Hanna
So sorry to hear any of this truly wish you get better
I am praying for you. I have no sight in my right eye due to optic neuritis.
I had an optic neuritis too..1m 53 with 5 kids..ur so lucky that u are goin to do ur medications..bcoz u are financially secured.unlike me my medications not continually do so..so i have to wait when will in goin to the doctor maybe i think when we get fund then we can move to do my medications..its hard but we have to face it..all we have to do is to pray to strengthen us..and live as we here on earth..god bless..
Sorry to hear that sister Hanna.When one door for life closes the other opens.Hope God does incredible things in your upcoming life years. Take care
Hanna, I relate to you. I was crying all through your video as it was like listening to me. I was in the last 6mths of teaching degree and got eye pain, and within couple of hours I lost all my vision. Tried methpred and didn’t work, then had another attack 3wks later and lost the little sight that did come back. They tried everything but nothing worked including doing a optic nerve biopsy. I had the first 3yrs in out hospital every few months. But after having my twins it improved. But last two years have been bad.
I get shocking pain now. I have the same exhaustion levels like you, and end up sleeping so much, or forget what I said in middle of sentence. I have same problem with heat. I’m weak so can’t do much, get shocking migraine, and now have low vitamin d and have broken both ankles over past few years. I’m on stupidmax, lyrica, and opioids. And have osteopenia because they just pumped me full of variety of steroids for first 12mths.
I’ve had it for 10yrs now. And this past month has been a real struggle for me too. They have now found demyelination on my good side which is scaring me to death. They haven’t been able to find the cause so far for me, but they closest is NMOSD. But now with these mri changes it could be early detection of MS. So am freaking out.
I’d love to connect with you, so will send this to your FB as well. Unfortunately I’m not in America but if you happy to have a friend in Australia to chat and vent with I’m all ears.
Stay strong. It’s such a frustrating condition when you go from healthy to feeling like everything constantly goes wrong and they can’t work out the underlining cause. But having friends that get it, make life better. I have friends that are great supports, but there are many times when they just can’t understand what it’s like to feel like you could go blind at any point with no warning.
Thanks for sharing you story. Hope to hear from you.
Annika xx
My heart goes out to you. It's incredibly frustrating when you don't know the definitive cause or when there's no real reason "why". Did you finish your teaching degree? I haven't seen your message on Facebook, but I will check my other folder. Life has been chaotic lately. I really appreciate your kind words. ❤️ I don't want to make assumptions but I'm assuming that Australia's climate is very hot? How do you deal with that? I live in a hot climate at the moment, not really out of choice but its really hard to try to mitigate that.
I’m lucky that I’m at the bottom of Australia so we have hot summers (100-107) and cold winters (45-55deg) . So summer I’m ok providing I’m under my aircon and not outside too long. We also get breaks from the heat. We will have 3-5days in a row building up to around 105d then have a cold change through for a few days then it builds up again. I always seem to get more attacks in the summer, esp around March after having a few months of constant heat. I get Uhthoff disorder too, where my ON is much worse with heat. So I can’t have long hot showers etc.
I’ll try sending this to your fb or messenger again. Look out for it. That way we can chat with more personal details. I’m also part of a ON fb support group which is awesome. I’ve made a few great supportive friends. A few are in the states. I can share that with you as well.
I never fully finished my teaching. I got as far as finishing all the theory as I could do that over time, but I still had 4wk of practical to do, but my ON was really bad at that time and I couldn’t sustain full time work so 4wks full time teaching was impossible. I was top of my class so always have a welcome back but would need to redo everything, now it’s after 5yrs.
I’ve tried a few times to work, but I’m too unreliable. So I do some photography work here n there. That’s about it. But last 18mths I’ve been bad too, so even that’s been on the back burner.
How are you feeling lately?
I know this is really late but my son has had all same symptoms and he has been diagnosed with optic neuritis because of having anti MOG related demyelinating disease. It attacked his eyes which caused the optic neuritis. He is 11 years old and went completely blind in 2 weeks. I just wanted to let you know what he has so people can maybe get there doctors to test for it. Anti MOG related demyelinating disease responds well to IVIG worth a shot to talk to your neurologist about it. Hope this helped. 💕
Tia Im part of a fb group called CRION. There’s lots of people there who have NMOSD. Check it out!! I’ve made some awesome friends there. We all understand what we going through.
Tia i personally don’t test blood positive for mog. So even thou Ivig works on me I can’t access it as I don’t fulfil the blood bank criteria.
stay strong. sorry to hear this
God Bless you. I too have NMOSD and I feel very much like you. It is a lonely disease
I totally feel your pain I'm in the early stages of trying to find out why I have blurry vision in my left eye I'm also so glad that I'm not the only one that's going crazy with this illness why does it take so long for them to figure out what is wrong with us I really appreciate your video and I will also praying for you
Same. This story really hit me hard as im also a service person. Why is it always the left eye?
Takes so long cos ultimately they dont care
Thank you for making this video...I’ve been going through this for about 4 months and it is such a crazy experience and I hate it so much :/
Are you recoverd now? Can you see all the things clearly and properly.my mother experiend bilateral mild papilitis .after steroidal medication she has blurred vision.now she is so discouraged and hopeless.
Thank you for sharing. I was recently diagnosed with Optic Neuritis
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
@@KevinKeenoo I am well now. I regained my vision and I don't have eye pain. I took a high dosage of steroids to treat it. Some colors are still washed out but I can't complain
@@sophistic8dladi3 Do you have any side effects of steroids ?
@@KevinKeenoo none that I recall. I only took them for a couple of weeks
This is exactly what I’m going through right now. I was just discharged after 6 days and diagnosed with Optic Neuritis OS and Lupus 😞 I hope you’re doing well now …
Hi Hanna, how are you? You are a very strong girl. I was proud of you. I have also been diagnosed with optic neuritis and am being treated with steroids. My vision went from 20/100 to 20/30, however I still see a lot of spots and I can't distinguish colors well. It's very distressing. It hurts. A hug from Brazil and I await your response. Hope you're okay, Hanna. You can give me hope for my improvement
How is your vision now? It has been almost one year
@@pieck9964 Unfortunately it has not changed much. All colors seem faded, I see through a fog looks like. It's very weird. Accepting it all is difficult :(
My brother has the same problem. Both of you are very strong .
Prior Navy . Going through the same thing I am going through all the testing. You are not alone
@Hanna Spencer i will tell you for sure that you or others like us are not alone, yes i am also having NMOSD. I got it in october in 2017 and i was totally paralyse lower body and was unable to feel anything and cant even move also bladder and bowel stopped. i am on rituximab hoping not to get relapses again and i also know that their is no cure for NMO/NMOSD but i made my mind that if i or anyone can stop NMO/NMOSD then i wont let it to stop me in my life. I dont think about it and just move forward with it by letting myself understand inside that NMO is just a part of me so that help me a lot coming up from it mentally. I hope this may help you to over come it and just for a short motivation i will say to you that before we breakthrough in life we need to breakdown first so NMO/NMOSD breakdown us so its now our time to breakthrough. I know it will be hard socially, physically and mentally but i am telling you no matter what dont let NMO/NMOSD to be the deciding factor for your life you need to some how come up, motivate and breakthrough yourself to stand up and start living your life positively and happily like ever before... :) :D
I know your pain. I have cluster migraines and tmj. And fatigue is a big problem with alot of nuero problems. I know it's hard,try and stay strong. I'm praying for you.
Tt Lola any testing or treatment?
Hey Hanna I have ON too m in the same NMOSD category and I have chronic migraines and fatigue is also my issue...also vertigo and everything u said...ur not alone..so dont feel that way...
thank you for making this video😭this made me 😭i was diagnosed with optic neuritis even though i was treated with IV steroids my eyesight it didn't respond to it😭😭😭i don't know what will happen to me now its so frustrating cause i can't drive,i can't work😭😭it's so devastating😭
How are u now? Does your vision back??
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
I hope everything is fine now, please make an update on this video🙏
I was just looking to see if there was anything that resembles my condition on here , and came across your channel - I hope you are feeling better now .
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
My sister has MOG . I just found the book from Dr. Wahls called the Wahls protocol. She has MS
Hope everything is going well with you Hannah. 🙏🏼
Im so sorry for you and i hope you ger the right treatment to give u more quality of life..
I’m currently experiencing this🙏🏾 hopefully everything is well!!
You're not alone I have promblems with my vision. I was diagnosed with same thing. It's a struggle with my vision to function. The headaches hurts and my left hand goes numb then goes goes back to normal. I to have to have a kat scan and to see if I have Ms. It's scary and makes me scared I have a daughter to take care of.
Flirtatious 86 any update?
Flirtatious 86 I have optic nerve swelling but nothing major...a few eye disturbances like floaters and stuff....but I’m scared and need to be better
@@missluvmoney i have same things as you any update ? has it gone better?
Hannah i hope you are doing fine now, please let us know how everything went, ive been dealing with the same problem for the past couple of months.
Hi Hanna I'm sorry for wat your going through I'm also in the Military and going through something similar the only thing that the eye Doctor gave me was eye drops, i started getting desperate and began doing Research and found that its Candida overgrowth good thing its curable, do your research. And taking Ibuprofen 800mg helps lower inflammation in the optic nerves...just saying... but don't take too much. Check yourself along for leaky gut. May GOD BLESS you.
I am watching your video and crying.😥 I am going through the same thing!!!! My vision is 20/100. I am desperate!!!! I can't drive, I cant work!!!
I know its painful. Please stay strong. Love you.
I’m new to this. Scared!
How are you now ?
Thank you for your video! It helped me. I have MS and optic neuritis. I have a lot of support but it is still hard. Hope you are hanging on there. I am on topamax too. This was a miracle drug for me. After 20 years of migraines.
good luck and i pray you get better. i may be facing the same. God bless you
I too am going through the same thing in my right eye after a loss of blood a month ago. Please if anyone can share some information that's helpful. You my sister will stay in my prayers.
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
Hope your situation improves 🙏
Check into LYME DISEASE, CHELATION THERAPY may help too.
Hanna, so sorry to hear what you've be going through. I have similar problems as you and having a terrible time with it too. I my vision problems are just part of an autoimmune encephalitis called DPPX. Tirefness, headache, left side and nerve problems. My antibodies messed up and on retuxamab and ivig too. Ask your neurologist to check autoimmune diseases... I feel miserable too... :-(
These symptoms are also very similar to sarcoidosis we have to ask ourselves what is it that is causing all of these strange neurological illnesses is it something in our food or environment or something else I hope this young lady has fully recovered and will let us know how she is doing
Hi I'm also suffering from optic neuritis from left eye you made me cry stay blessed
still have it?
Hi Hanna, I just wanted to reach out and thank you for this video. You are not the only young person going through this, scared; I’m 22 and was going to be a teacher before I started to get debilitating migraines and optic neuritis. We still don’t know why, I get my MRI results back this week so fingers crossed it’s something treatable.
I wouldn't want my worst enemies to feel like you and I. As a veteran I hope to get this taken care of at Palo Alto. I'm scared too this has been third attack so far I thought it woul clear up faster but nope, it's painful just to move my eyes so hard to get the smallest task done. I'm scared too
In May of 2018 I was diagnosed with optic neuritis. To this day I am still suffering with the condition. It is difficult because we become prisoners in our own homes. But if we train ourselves and work very very hard at it we can find a new normal. For me the hardest part has been when people tell me I'm not really blind. Like fuck them. I am now legally blind, unable to work and struggling everyday. Prayer is the only thing that helps me through it all. I hope and pray your outcome will be better
Hello everyone and to Hannah,
I hope everyone is doing fine and getting better! So I also have optic neuritis and am still in recovery. So what happened? Basically 5 months ago I was diagnosed with dengue so that was just dengue for about a week with a temperature of 40-41°c. We were expecting to be discharged after that week but on this 6th day of that week I noticed something changed with my vision. I told the doctor and he said maybe it was just because I was over sleeping. So we disregarded it but on the 7th day which is supposed to be our discharged day my eyes vision began to worsen. That time the doctor was alarmed and brought me to this area were they have my eyes checked i dont know where it was because I can no longer see properly and my eyes are not that good already at adjusting from light. When they checked it they found my nerves on both sides of the eyes to be inflamed. So they don't know what to do because usually what they do on optic neuritis alone they have this to be followed by steps on treating it, so they were giving us hopeless choices of which to choose. Because they dont know if this optic neuritis of mine is caused by the viral infection which they know how to treat it or caused by Dengue. They don't have any idea. But the doctor said that there's a big chance that it is caused because of dengue but they have no assurance at all. Until all doctors gathered together including my neurologist and they find my case very rare since in the Philippines there is no study about it. If there will be i might be the first one. So what choices they gave me us was whether to follow the treatment where they IV me with steroids or have it hel on itself.. but both choices were no guarantee of bringing back my vision. That was the hardest part. They didn't give false hope so they immediately told me the truth because also them they dont know what to do because doctors are only humans. U get what isay right so. We were scared at that time because everything was so abrupt. So we did go for the treatment and got my self in steroid for a month 5months ago and now im doing better. And still recovering.
What's so hard about it before was that i was also an active person and i do lots of sports so it was very hard.
But i realized about what God has done to me from the past. He has given me problems before that i was able to surpass and why should i fear this one. He has given me this challenge i know He's by my side. Keep fighting everyone!!!
If u need someone to talk to feel free to pm me
FB : Eyys Mark Goks
facebook.com/acecgocotano
I hope you are doing better dear. I also have optic nerve damage due to upper cervical instability. If you can please get checked for that. I'm getting prolotherapy.
Hanna, your video made feel like I was with you. My husband is going through the same symptoms. It is heart breaking. I am so sorry for your vision loss.
Could you please tell me your final diagnosis? Doctors are looking into NMO, MOG for my husband. Right now NO is telling him NAION with no treatment but his vision loss in left eye is chronic which is not typical of NAION.
My husband has headache on left side of head every day.
How are you doing now? I have MS since 12 years now and a vision of 20/200. Im from Germany and you are declared legally blind there at 20/400. I also get Rituximab but nothing else besides a ton of supplements. I'm still active, riding my bike, finished university as a computer scientist, have a little daughter now and beautiful wife. Always stay positive :) Life is good or can be good if you let it.
Do you feel eye pain ?
@@KevinKeenoo Sometimes behind my eyes wehen i move them. But not severe.
@@klausenzensperger179 How do you manage the pain ?
@@KevinKeenoo Your getting used to it. At least during the day. It just keeps me from sleeping. I dont want to take any Pain medicine anymore so im trying to get this under control with cannabis, which is actually pretty hard to get here in Germany. I only take it when my family sleeps, so i can sleep myself. If i dont have any. Sleeping and functioning normally is impossible. No sleep is destroying you.
Puppy Luke Skywalker ! That’s cute ... You should get a cat and name it Darth Vader and create chaos in your house !
Sending you lots of love I've had optical neuritis it's scary but keep on fighting ❤
How are you now ? Do you still feel the eye pain ? What treatment have you followed ?
@@KevinKeenoo yes I still have the eye pain and headaches every day I'm on DMD's and lots of pain killers
@@jdraper23167 Does it pain when you move your eyes ? Are you able to lead a normal life? I mean, I hope it’s not affecting your work. How many pain killers do you take daily ?
Hanna, are you still using your channel. Are you there? Let us know if you’re still there pls.
Stay strong girl! That is so traumatizing to go though. Hope you feel better now🙏 I have ms and I found it out by optic neuritis. It pretty much sucks :( I'm so sorry you had to go through this. My vision is back but who knows when I'll have another attack. Are you feeling better now? Wish you the best
I am diagnosed optic neuritis 2 month ago during my exam. Am right eye was 20/15 but with in 10 days i scored 20/40. My doctor gave me 5 days of methylprednisolone 1000mg. . After thus my vision gets better i scored now 20/20. Alhamdulillah. But i can't see coloures diply. 😢....... I hope that allah repair you
Do you feel pain when moving your eyes ?
Yes, little paine i could not notice it. But My doctor ask me this syntom then i notice this syntom. Now my vision is 6/5,6/6
i have the excat same thing.. i hope your doing better
I kn a bit wht u r going through . I also hv optic neuritis in my left eye. Just stay strong take good care.