Announcement

Collapse
No announcement yet.

BINO New DX would MS meds help?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    BINO New DX would MS meds help?

    Hello all, I have just been DX with bilateral internuclear ophthalmoplegia and MS. I am currently taking no meds and am not sure I want to start any if its not going to help with the BINO. My vision is one of my big complaints. I have done two rounds of IV steroids and they help very little. I am going on 8 month with this BINO. My Neuro Op says I have to live with it.... I blame everything on my eyes...

    My question is
    Does someone have BINO and is being treated with good results and what are you doing?

    Thanks for your help.

    #2
    Hello vender and welcome to MSWorld.

    The Disease Modifying Therapies(DMTs), Disease Modifying Drugs(DMDs) were not developed to fix or help symptoms, although some do see symptom improvement. The DMDs/DMTs are to hopefully decrease lesion load, decrease the amount of relapses and their severity and hopefully slow progression. There is no guarantees, some do fine on the DMDs, some still progress.

    Symptom management medications are used to treat some of the symptoms of MS.

    Steroids are used to treat exacerbations (relapse, attack, flare-up). Steroids will not change the course or outcome of the disease. The more you use steroids the less effective they become. Some exacerbations do not require steroids.

    There is no medication for INO. You can try prisms for your eye glass lenses. They can be difficult to get used to and they may or may not help, but it might be worth a try.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Hi vender:

      So sorry to hear of your BINO. I've had diplopia a couple of times (not from BINO), so I can appreciate the difficulties you're going through. And I can appreciate that getting a diagnosis of MS can be quite a shock.

      It sounds like you aren't having many other issues from MS, so right now you're thinking of MS as mostly being BINO, but there's more going on behind the scenes. To understand what's going on with your BINO, you have to stop thinking of it less as just BINO and more of it being MS, which is what caused it.
      Pppp
      When nerves are damaged, whether from MS or a number of other things, they have to heal by themselves. There is no treatment that makes them heal. In MS, steroids can be used to suppress the inflammation that caused the nerve damage and make a quieter setting in which the nerves can heal, but the body still has to do all the healing on its own.

      Sometimes nerves heal all the way, more often some of the nerves heal to some degree, and sometimes few to none of the nerves heal. Accepting the unpredictability of the outcome can be one of the hardest things about having MS. Once the damage has happened, there's not much that can be done. The body has to heal on its own, at whatever speed and to whatever degree it's going to.

      I'm sure your neuro-ophthalmologist has already told you this. The longer it takes for damage for MS to recover, the lower the chances are that it's going to get better. In MS the guideline is 6 months. Any problems that haven't resolved within 6 months has a very low chance of getting better. You're 8 months out, so that's why your doctor told you you'll have to live with it.

      There is no known intervention for BINO that's going to make it get better if it doesn't get better on its own. I would also be really interested to hear from anyone who has a treatment that's making BINO better, because there is no known treatment for it and it would be quite a breakthrough if someone knows of one.

      That addresses the BINO, but it doesn't address the underlying MS that caused it.

      MS is a chronic, ongoing condition that causes more damage with time. The purpose of the MS treatment medications is not to heal existing damage. The purpose is to prevent further damage. And studies have shown that, the earlier a person starts taking an MS treatment medication, the better their outcome in the future is.

      MS can damage nerves anywhere in the central nervous system, so it can cause all kinds of problems all over the body. Right now you're thinking of MS as being mostly BINO and affecting your vision. But another MS flare can cause problems anywhere else in your body. So that's the reason to start taking a treatment medication. Not to fix your BINO -- because they won't -- but to try to prevent more nerve damage in your central nervous system in the future.

      There's so much to learn about MS, and it will take awhile for that to happen. There are many good online resources for education, starting with the website of the National Multiple Sclerosis Society. A lot of people recommend the book MS for Dummies.

      There is a small chance that some optical interventions might -- might -- make the double vision easier to live with. (This is not a treatment for BINO.) If you're interested in pursuing that, google Neuro-optometric Rehabilitation Association and, from the Find a Provider tab on their website, search to see if there's a doctor in your area you can go to for an evaluation.

      There's a lot going on for you, and I wish you all the best on your journey with MS.

      Comment


        #4
        INO sucks. That's how I was diagnosed 4.5 years ago. I did steroids, and much of it went away after about 4 months. But I was still getting some healing after a year.

        I got on a DMD a couple months after diagnosis and have not had any attacks, brain changes, or disease progression since.

        It's hard to think about when your dealing with BINO--which in my opinion is one of the most difficult symptoms to live with--but you don't want to find out where your next attack is going to be. Incontinence? Numbness throughout a leg? Cognitive problems? Why do that to yourself?

        Comment


          #5
          Hi Mable,

          Originally posted by Mable View Post
          I got on a DMD a couple months after diagnosis and have not had any attacks, brain changes, or disease progression since.
          I am very happy the DMD is helping you I do hope you have no there problems, that's the hope we all have.

          It's hard to think about when your dealing with BINO--which in my opinion is one of the most difficult symptoms to live with--but you don't want to find out where your next attack is going to be. Incontinence? Numbness throughout a leg? Cognitive problems? Why do that to yourself?
          You do know this can happen even if you are using a DMD?
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment


            #6
            Sorry for not replying I didn't think this posted. I am using valium for the BINO. seems to help ease the eye pain (relax it). I am just amazed at how fast this is "taking over" my body. Every week something new is happening. Pins in my face. Heat now bugs me (the sun). cognitive problems (im turning into an idiot). cramps in my legs. Is this what ms does? hits you fast and hard?

            I started another thread about meds. My neuro wants me to wait a couple weeks and take the valium then decide what MS treatment.
            Thanks for your replies.

            Comment


              #7
              Hi Mark,

              Originally posted by vender View Post
              cognitive problems (im turning into an idiot).
              What is the dosage of your Valium and how many time a day do you take it?

              If you have experienced cognitive difficulties since starting Valium then the Valium can be the cause. Benzodiazepines, which Valium is one, can cause confusion and you would have trouble with cognition. Valium is a Schedule IV drug.

              A well known use for Benzodiazepines is anxiety. It can calm a person down and make you feel more relaxed. I do wonder if this is the reason your Neurologist prescribed Valium.
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment


                #8
                Originally posted by SNOOPY View Post
                Hi Mark,



                What is the dosage of your Valium and how many time a day do you take it?

                If you have experienced cognitive difficulties since starting Valium then the Valium can be the cause. Benzodiazepines, which Valium is one, can cause confusion and you would have trouble with cognition. Valium is a Schedule IV drug.

                A well known use for Benzodiazepines is anxiety. It can calm a person down and make you feel more relaxed. I do wonder if this is the reason your Neurologist prescribed Valium.
                5mg every 8 hours. This is the only thing that helps. I heard from others with BINO also valium. I use my brain quite a bit making custom furniture and my cognitive was affected long before the valium. My neuro just gave me amantadine to help with the fatigue. I never had an issue with anxiety. Im pretty laid back and happy but this MS and BINO are not making me happy.
                Thanks all!

                Comment


                  #9
                  Hi Mable has anything helped your BINO?

                  Comment

                  Working...
                  X