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Asteria

786d

Hello I’m fairly new, I’ve been dealing with almost an unknown issue for many years. My immune system is attacking my body and I’m beginning to go blind. I’m scare and don’t know what to do for they cannot tell me exactly why my immune system is doing this. I’m scared and lost.

Top reply
    • QueenSmurf

      657d

      based on the link lebers is painless? That might be why he didn't suspect that. I went and saw him because I have flares of intense pain behind my eyes, and jaw area, I thought it was tmj. I planned to see neuro for botox injections for the pain but something told me to get my eyes checked and sure enough my the nerve behind my left eye was very swollen. The ophthalmologist made a huge deal about it and was suprised I passed the color test and my vision wasn't already effected. He ordered a Stat MRI that I had done but don't know how to read so I'm waiting to see the neuro ophthalmologist and its taking a long time because my old pcp is crap and they kept rejecting the referral so I had to change pcps. (When it rain it pours)

    • QueenSmurf

      657d

      based on the link lebers is painless? That might be why he didn't suspect that. I went and saw him because I have flares of intense pain behind my eyes, and jaw area, I thought it was tmj. I planned to see neuro for botox injections for the pain but something told me to get my eyes checked and sure enough my the nerve behind my left eye was very swollen. The ophthalmologist made a huge deal about it and was suprised I passed the color test and my vision wasn't already effected. He ordered a Stat MRI that I had done but don't know how to read so I'm waiting to see the neuro ophthalmologist and its taking a long time because my old pcp is crap and they kept rejecting the referral so I had to change pcps. (When it rain it pours)

    • QuestionQueen

      786d

      Sorry I know you are Asteria. The name above is because of my auto-correct.

    • QuestionQueen

      786d

      Asterisk— I’m so sorry. I have some questions. What is your vision like? Is it very blurry? Do you have peripheral vision? Do your eyes hurt? When I first began to lose vision I was wrongly diagnosed several times. They finally diagnosed me with MS, which cause optic neuritis….the optic nerve tells your brain how to see and my nerve is damaged because of the MS. How do you know it is your immune system doing the attacking? Is that something a doctor told you? Do you have any other symptoms besides your vision loss? I’ve been through vision rehabilitation and through that I’ve met lots of people with different eye conditions. I am not a doctor but I have friends with all kinds of eye conditions, so I might can help with information. The one thing I want to share is that there is life after losing vision. It’s terribly scary to lose vision but thankfully we are in an age where there is all kind of help available. There are all kinds of services that can help you. How old are you? I’ll try to help if I can.

      • QueenSmurf

        657d

        @QuestionQueen I hate to highjack this post, but im curious if you've ever seen anybody with optic neuritis that didn't have MS? I have it and am waiting to see a neuro ophthalmologist, but the ophthalmologist I saw said he only sees it in MS patients and he's really sure that's what I have. I also have elher danlos syndrome, so im kind of hoping that maybe that caused the swelling and it's not MS but he didn't seem to think that was possible.

        • QuestionQueen

          657d

          @QueenSmurf he tested for something called Lebers, which caused optic neuropathy. I have a friend with Lebers and he has lost significant vision. He has adjusted well, though it took a while to do some rehabilitation. If you have the other markers for MS (lesions, etc.) that is probably what is the cause of your optic neuritis, but there are other possibilities. I put a link about Lebers in the stuff above. I hope you are tenacious in asking the questions you need to. Read about optic neuritis on your own and come to your appointments armed with questions. Always be your own advocate. Hope you and your doc figure it all out. Message me anytime with questions about MS or optic neuritis.

        • QuestionQueen

          657d

          @QueenSmurf my diagnosis of my eyes and MS was long in coming because of this very thing. I have had no other symptoms of MS besides optic neuritis…except on my MRI lesions showed up. I have no balance issues, non of the typical symptoms. I do think that you can have optic neuritis and not have MS. The reason I think so is because my MS neurologist did some genetic testing to look for an inherited disease that causes optic neuritis. It had something to do with testing for something https://www.ncbi.nlm.nih.gov/books/NBK1174/

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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