It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

  • Post your vision symptom history with MS

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 08-16-2016, 06:52 PM   #1
    worksfire1
    Newbie
    (female)
     
    worksfire1's Avatar
     
    Join Date: Aug 2016
    Location: Charlotte, NC
    Posts: 7
    worksfire1 HB User
    Post your vision symptom history with MS

    I was diagnosed with Multiple Sclerosis in June 2007 when I presented with weakness and pain and numbness in my upper right leg. I had a brain MRI which showed a few small lesions. But to quote my neurologist, "the spine is where all the action is."

    Since then, I have had a few episodes where in the peak of the summer here in the South, I have had dimmening of my vision where it isn't as bright as normal. First, my neurologist tried steroids, and they would immediately improve my vision, but then in a few days the dimness would come back. But, all in all, the whole episode would only last about a week before I was back to normal. This was in 2008.

    Then in 2010, it happened again and this time the steroids didn't improve my vision even for a few days, so my neuro put me in the hospital for plasmaphoresis (a procedure where ALL of your blood is filtered out of your body while hooked up to a machine and the antibodies somehow get filtered out, then they let your blood cycle back into your body). Whether or not plasmaphoresis helped or not, my vision improved within a week.

    It happened again in 2011 in the peak of the summer heat again. He did plasmaphoresis in the hospital again. Reminds me of dialysis. In fact, dialysis nurses oversee the procedure. My dimness went away within a week as usual, again. BUT, now my neuro changed my diagnosis from MS to NMO which is basically a version of MS that has all symptoms of MS plus vision loss. But you can have vision issues like my dimness with MS. It is called optic neuritis apparently.

    Unfortunately, if you (actually have) NMO, then MS RRMS Disease Modifiying drugs make your symptoms worse. So, my neuro took me off Rebif and put me on NOTHING. I've been on nothing for 5 years. Now my walking is getting so bad that I can only walk 25 feet before pain and weakness make me have to sit down immediately, even on the floor, if no chairs nearby. I am desperate for MS medicine. I do not believe I have NMO as I do not have permanent vision loss or even severe vision issues.

    Can you guys share your history of vision symptoms that you have had that your doctor still thinks you have MS and hasn't taken you off all MS drugs for fear you have NMO (NeuroMyelitis Optica) version of MS that makes RRMS drugs worse on NMO patients. I really want to get a handle on reality of what the norm is for vision symptoms for typical MS diagnosed patients with episodes of optic neuritis.

    I am trying to get "approved" by the MS Clinic in town to start seeing the MS specialist I should have been seeing all this time I have disagreed with my diagnosis especially being denied MS medicines when I clearly have MS and not NMO. Does anyone know what the MS Specialists are looking at in your medical records to determine whether they "accept" you as a patient or not? I am going thru my Primary Care Physician and skipping my neurologist all together so as to not **** him off since he gives me my much needed pain medicine. Can I selectively give the MS Specialists/Clinic my MRIs and spinal taps without the neurologists office visit dictations which say "NMO diagnosis" on every page?

    Lots of q's. Hopefully some of you can answer some of them and together I can piece the info together and know how to go forward with facts about vision symptoms in normal MS, and what MS Specialists need in order to "accept" me as a patient.

    Thanks,
    worksfire1

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 08-17-2016, 05:25 AM   #2
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,200
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: Post your vision symptom history with MS

    Hi. You wrote "BUT, now my neuro changed my diagnosis from MS to NMO which is basically a version of MS that has all symptoms of MS plus vision loss. But you can have vision issues like my dimness with MS. It is called optic neuritis apparently."

    I think you might be confusing something here. If your original DX was actually changed to NMO, you do not have MS.

    Optical Neuritis is not vision loss. Having had it many times, the symptoms of ON are pain behind the eyes. Color vision confusion (red and orange look the same to me), but not loss of sight. Peripheral vision loss (looking to the side and seeing black spots). I have never had vision dimness. ON can be treated with steroids, usually IV; however the more you use steroids, the less effective they are. ON will resolve itself on it's own, but it can take longer without treatment. It is also extremely painful.

    NMO is more severe than ON and is a symptom of Devic's disease. Devic's is a cousin to MS; however, it is not a type of MS. It is a completely different disease.

    It sounds like your original diagnosis was incorrect and that with newer testing and more information, your doctors have changed their initial thoughts. I know someone who has been treated for Lymes for the past 2 years and just this week was told it isnt Lymes, but MS! This happens. Its very unfortunate, but doctors do make mistakes.

    If you are really worried that your dx is not concrete, have you considered seeing a Neuro Opthamologist? This is an eye doctor who is a medical doctor (not an optometrist) who specializes in diseases of the eye caused by neurological disorders. They are hard to find, but large hospitals usually have them; especially University hospitals. I would start there. Get a good neuro opthamologist to check you out and look at your films and see what they think.

    Good luck to you!
    MSnik
    __________________
    RRMS- dx 05

     
    Reply With Quote
    Old 08-17-2016, 06:06 AM   #3
    Snoopy61
    Inactive
    (female)
     
    Join Date: Nov 2007
    Posts: 1,565
    Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
    Re: Post your vision symptom history with MS

    Hi worksfire1,

    Quote:
    BUT, now my neuro changed my diagnosis from MS to NMO which is basically a version of MS that has all symptoms of MS plus vision loss.
    Multiple Sclerosis (MS) is a completely different disease than Neuromyelitis optica (NMO). NMO was once known as Devics Disease and was thought to be a variant of MS, this is no longer true.

    There is a blood test for NMO, there is no blood test for MS.

    If you have NMO then you were misdiagnosed with MS. Please seek the advice of a Neurologist that is familiar with NMO for the proper treatment.

    Last edited by Snoopy61; 08-17-2016 at 06:17 AM.

     
    Reply With Quote
    Old 08-17-2016, 07:03 AM   #4
    worksfire1
    Newbie
    (female)
     
    worksfire1's Avatar
     
    Join Date: Aug 2016
    Location: Charlotte, NC
    Posts: 7
    worksfire1 HB User
    Re: Post your vision symptom history with MS

    Yes i am very aware NMO is different and worse than MS.

    There is a blood test. I test negative. NMO patients have no o-bands in their spinal tap while MS patients typically have many. I have greater than 5. NMO patients typically have no brain lesions. I have many. NMO patients have visible damage to their optic nerves seen by neuro-opthamologists. I have none. NMO patients typically have permanent vision damage. Mine is temporary lasting less than a week in the summer.

    I don't think i have NMO. I think i have MS. This distinction determines whether or not i get MS medicine or nothing at all. I hope i can get approved to see the MS specialist so they can determine which i have. I think my regular neuro doc jumped the gun just because i have had vision issues.

     
    Reply With Quote
    Old 08-17-2016, 09:21 AM   #5
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,812
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Post your vision symptom history with MS

    worksfire1,

    O-bands do not present in all MSers. 85% of MSers who get a lumbar puncture have shown o-band elevation, but those elevations will also vary. The differences are statistically significant as to result in the test failing as a specific test for MS.

    Optic Neuritis might be in play. Also, steroid use may or may not be effective. If steroids have been effective, over time, the steroids become less effective or even no longer be effective at all.

    As you live in the south, if you have some repeating issues, you might track the symptoms and see if there are some triggers. A slight rise in core temperatures can cause neurotransmitters to be interrupted and symptoms can present.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Reply With Quote
    Reply Reply

    Tags
    specialists, vision



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:20 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!