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  • deluchembe
    My main MS symptom is related to vision loss. I also have tingling sensations in my legs and arms, but those aren’t as debilitating as my loss of vision. I’ve been reading a lot about people struggling with MS but haven’t yet found those whose main persistent symptom is vision loss. I was diagnosed with Optic Neuritis In 2017 (a year after being diagnosed with MS). Are any of you also struggling with vision problems? 
  • maria1
    What are you doing for your eyes? What are you doing for your ms? Our emotional place has much to do with controlling ms, are you keeping yourself peaceful? 
  • deluchembe
    Hi Maria, I haven’t been given any solution for my eyes from doctors. Glasses don’t help
    the issue. It’s quite frusfrating. For my MS overall, I’ve begun eating healthier and am on Copaxone. I do struggle with tons of stress at my new job.. I know this can’t be good for my symptoms. 
  • maria1
    How we handle stress and frustration makes a significant difference in the progress of ms. Making the best of a bad situation is relevant. Making muscles tense all the time puts a burden on the body. It is up to you to find way that keep your body comfortable and your mind quiet. I stopped all disease modifying drugs and related ms prescriptions about three years ago. After being on betaseron for more than twenty five years I am at the stage where it does not help anymore and I have moved on to spms. So what, big deal, at almost 72 things are getting old, parts are slowing and life is moving in one direction, again so what, keeping myself with soft muscles, no matter what, and a quiet mind has the doctors impressed with my eyes, almost not noticing the neuritis, I can still walk, though like every part of ms, sometimes everything gives me trouble. I am having problems using my hands and arms and hemp oil and hemp cream have made  dramatic relief as well as Vitamins and suppliments, even  my strength has improved. 

    Try googling the problem you have and see what homeopathic solutions are available.  Ayurvedic medicine is a healthy choice for improving everything. Also know that most issues with ms are fleeting and do go away given time. Staying in the moment aids in seeing right now and not all the way down the road. New solutions appear all the time and wisdom is earned with age so being kind to yourself is a good rule, do everything you can to take really good care of yourself, be selfish about your well being and do your best to avoid regret, make your choices based upon whether or not you will regret it tomorrow, because regret is the best enemy of a better life with ms alongside stress and anxiety.
  • deluchembe
    wow! I appreciate your advice so much, Maria! I’m so glad you mentioned alternative ways to take care of your body. If you don’t mind me asking, did the doctors ever give you solutions for your neuritis, or did you just find the alternatives that worked without their help? I’m curious to know how doctors have dealt with other patients suffering from optic neuritis. I’ve seriously considered finding alternatives but all I’ve been told is that MS prescription drugs (namely, Copaxone) is the best way to go. Part of me believes there’s more I can and should do. 

    I will definitely make a more conscious effort to relax and reduce my stress. I will especially be kinder to myself! I feel we need more of that period :)
  • maria1
    I have always been put on steroids as pills or infusions, but at the same times I have been sooooo ill it was necessary to try to control the exacerbations. It took many years for my eyes to clear up. But I credit talking to my brain for part of it. I am a strong believer that the brain takes orders and does what we tell it to do. Both silently and out loud I ask my brain to 'fix it' and trust that it will, even though it may take some time. Brain fix my eyes. Of course some ailments leave so much damage it will take longer or may be impossible to repair. My brain doesnt listen or is unable when I ask it to lose weight, giggle.

    There are many posts about supplements people take.B1 zinc omega 3s are helpful for eyes.

  • deluchembe
    Steroids definitely tore my body apart! I was placed on an IV with steroids for 2 hours each day during the first week after being diagnosed. Worst week by far! Couldn’t eat anything and broke out all over my body. I threw up pure liquid during the last days because my stomach was empty. 

    I will definitely look into more information about supplements! I’ve been in a state of denial for the last 3 years but am finally ready to start helping myself. We’ll see how talking to my brain works. I’ll still give it a shot and sneak in the “lose weight” command because i definitely need to try after all this holiday food Hahahaha 

    you have been aich an amazing help,
    Maria! I wish I would have been open to this sooner.. but it’s never too late to start making positive changes!
  • lovereign
    Yes, though I haven't gotten optic neuritis. I have nystagmus (eye balls shake side to side when in a moving vehicle or walking) which was caused by having most of the lesions in my brain on my cerebellum. My neurologist and my neuro-ophthalmologist both told me it's a permanent symptom. Because of the nystagmus, I am no longer able to drive at all. With the nystagmus I cannot move my eyes to either side because they automatically move back to the center. One of the first symptoms I had was loss of peripheral vision in my right eye. That has since returned to normal. I also experienced double vision and blurry vision. Shortly after getting diagnosed I noticed that my right eye started to black out. I freaked out and thought I was going blind. The next morning my eye was fine. I realized that it was due to the high stress and insomnia I was experiencing then. Now I do my best to stay calm and to go to bed at the same time every night. I still have insomnia but getting my sleeping schedule on track does help my body to regulate the circadian rhythms.
  • deluchembe
    Thank you for sharing! I hadn’t heard of nystagmus before.. it must have been frightening to experience those symptoms for the first time! I also stopped driving because of my symptoms, but this was a personal choice. Although the last ophthalmologist told me they’d need to report that I’m not able to drive because of how poorly I performed on the vision exams.

    How was the transition for you when you stopped driving? Has it been difficult for you to explain your reason for not driving to others? Having to give up driving and sell my car has been one of the most difficult parts of my journey. Thankfully my husband is able and willing to drive me to and from work every day so I’m still very blessed :) Lyft/Uber can get expensive lol
  • lovereign
    The hardest part about not being able to drive anymore is the feeling of being stuck here. I live at my mom's house now since I got sick. This house is in a rural area where there is no public transportation. And being that I also cannot walk like I used to especially longer distances, I am trapped here. The only time I get to leave is for appointments. My medical insurance covers transportation to those. Once a month or so I will go with my grandma to the closest grocery store so I can buy groceries to last me the whole month. Rarely does my cousin or aunt come for me to take me out to eat lunch. Sometimes I will walk to my grandma's house (less than a 5 minute walk away since she lives down the street, literally on the same street as my mom's house). Other than that I stay at home, in my room, trapped. Yes, you are blessed that you have a husband who cares so much about you. Let him know how much you appreciate him being there for you especially when you most need him. That is something very special, never take it for granted.
  • MS_Navigators

    You may want to search for an MS specialist or a neuroopthamologist if you are not already seeing one. You can also read more about vision issues in our online brochure: Vision Problems

    If you have any questions, please do not hesitate to call and speak to an MS Navigator at 1-800-344-4867, Monday through Friday.

    Warm Regards,
    MS Navigator
  • deluchembe
    Thank you! This was a very helpful read. I do have an appointment with an MS specialist next week, but I will definitely ask for Neuro-Ophthalmologist options as well :) 
  • maria1
    In all fairness to my brain: an uncle of mine use to say, 'The only way to lose weight is to keep your mouth shut.'
  • kiguana1984
    I had really bad loss of vision and mostly from my right eye. I had to get six IV steriod infussions, and that helped a little. However, the side effects were horrible. Everything tasted really bad and I was always nauseuos.I'm still having trouble with my right eye, but at least I'm able to drive now. I also have an appointment with an ophthalmologist to check if my vision is permanently damaged.
  • deluchembe
    Omg yes! Intravenous steroids messed me up too. It also made me nauseous and I couldn’t eat or stand the smell food.

    Are the steroids the only treatment you’ve received for your eye? Have the doctors given you an official diagnosis for the loss of vision (like optic neuritis in my case)? I hope it all goes well with your ophthalmologist appointment!
  • kiguana1984
    They haven't given me a diagnosis for my vision, but I'm pretty sure they will let me know on the day of my appointment. I'm currently on Copaxone.
  • golgotha
    Are any of you also struggling with vision problems?

    When I was 27 I was blind as a bat for about a week. After that I had ON that would put puffy white-ish "clouds" into my field of vision if I was too hot. Unless I cooled down I would temporarily lose vision again.

    Fortunately, those issues disappeared after a couple of years. But with that said, in an attack/flare-up recently (decades later) I've had some more ON issues but not the white clouds (more of loss of stereo focus and blurriness). However, those seem to be declining in frequency and hopefully going away.

    Having read about you, two thoughts come to mind (more advice -- just what you need, right?!:).

    A few years ago I followed Terri Wahls' diet for over a year, a diet that calls for eating a profuse amounts of greens and veggies. At that time my vision was declining a bit, but pretty much like it does for lots of people in their late-40s/early-50s. But while on that diet my distance vision improved to better than 20/20. Today I'm a firm believer in eating greens and veggies. :)

    The other part is stress. There are lots of people that make links between MS issues and stress. Since your livelihood depends on it it's a tough issue, but if your job is a source of stress you might want to think about how you can reduce and deal with that issue.
  • deluchembe
    Golgotha—yes, I’m soaking in alllll the advice i can get! It definitely feels much better to receive advice from people like you, who understand the personal struggle with MS! I’ve received more than enough advice from people who claim to “get it” when they don’t even struggle with the disability -_-

    you know what, I think I will give more veggies a try! I’m personally horrible at it, but I can’t make excuses anymore. 

    I truly appreciate your input! It’s very motivating to read the experiences of others and take in suggestions because I’ve been so lost and confused throughout this process      Thank you! 
  • Brittany-Kaylyn
    I am still in the proccess of being diagnosed but to answer your question, yes. I have significant changes in my vision that have gotten to a point where I just get so frustrated. I work at an optometrist office as an assistant to the doctor so whenever I am having severe problems, he checks them out for me. However, he has not figured anything out yet. 
  • crystalstill
    Hey girl, I have vision problems BAD. My eye doctor said it was from not wearing my glasses for a few years. But I got new ones and as my situation got worse, so did my eyesight. My eyesight was one of my first issues with all of this. And it is one of my main issues still. My vision gets so blurry moat days if I don't wear my glasses. It's like there's something covering my eye and making everything have a film over it causing it to be blurry and ten times harder for me to focus on. It's rather scary for me, especially if I'm driving. If I forget to wear my glasses and am driving down the road and my vision starts to get blurry, it makes me scared to the point that I want to cry. This whole ordeal is quite frightening for me. And I don't think those around me understand just how bad it is for me, even though I explain it thoroughly. I think just because they aren't going through it, so they can't truly relate. But I am always afraid that one day my vision will just go completely and I won't be able to see my kids and their smiles anymore. And that thought terrifies me.