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    Dazed and confused.

    Hello. Just a quick introduction, a fairly boring story, and probably a few scattered thoughts.

    David, 44 (for a few more weeks).

    November 2016 I woke up with a little fog in the left side of my left eye. Ignored it and over the next two weeks it slowly started moving more towards the center. Went to my family doctor who saw nothing but referred me to an ophthalmologist. Went the next day and the ophthalmologist said the gel in my eye was turning to fluid and it was just a natural sign of aging. Told me to come back in a year. A week later it’s getting worse so I find a different ophthalmologist who examines me and says I have mild optic neuritis. Tells me he wants to see me again in two weeks and sends me on my way. A week later, I can hardly stand it and tell him I need to come in. Go in and he looks at my eye and says I need to go to the emergency room for solumedrol (sp?). I go to the ER, and they instantly admit me to the hospital. Good times. I got a lumbar puncture, 2 MRIs, and enough blood tests to qualify me for a mission to mars. For the first time the letters MS come up and of course, terror ensues. Results come back and every single test is negative. No oogly oogly (whatever) bands in spinal fluid, perfect blood work, and a clear MRI with the exception of a few spots that match another MRI I had 10 years ago and are also in “non MS” areas.

    Back to to the eye. Every single report I’ve read about someone having optic neuritis ends with them saying some or most or all of their vision returned. Mine has not. Legally blind in my left eye. I have great perriferal vision, but central is nothing but light, and I hallucinate out of that eye constantly. Also have affront pupillary defect in that eye now which means I’m basically a vampire and to be in the sun requires very dark wrap around sunglasses.

    6 months later, which is now July of 17, my neurologist (assigned to me at hospital, forgot to mention that) wants another MRI which comes back identical. He tells me the optic neuritis happened for an undetermined reason and they no further MRIs would be ordered by him and that the only reason I needed to ever come back was if I was having problems. He stated I do not have MS and have nothing really to worry about.

    Summer cruises by by and going into winter I start complaining about my eyes. Something just doesn’t seem right. Trouble focusing on things, trouble seeing clearly, etc. basically the only time I see good is when there isn’t high contrast between two objects. Things like browsing shelves in stores is nearly impossible because everything blends together. I make an appointment at the Cleveland clinic because honestly, I’m tired of hearing people say go to the Cleveland clinic. Anyways, eyes are fine, nothing to see here, have a good day, and move along. Of course, the eye test is black letters on white background. Pretty much the best contrast you can get. So I go home and, well, I just go home.

    Merry christmas, happy new year, blah blah bla. Coming out of winter I start to notice any thing I do exhausts me. I’m sore much easier than ever in life, I stagger around like I’m hung over (even when I’m not) and all I want to do is sleep! Changing from one state after being in another for a long time is very bad. The easy example is first thing in the morning. Trouble getting out of bed and bumping into things on the way to the bathroom. The trickier example is after driving for 4 or so hours straight, I can pull into a gas station perfectly fine, but once I get out of the car, I feel like I’m stone drunk! I stagger, swerve, and have trouble walking a straight line. It passes, but sucks and is embarrassing.

    Next comes the burning man syndrome. For a few weeks, my right forearm feels like it has a chemical burn on it. Mild, but comes and goes. Starts to get worse and I notice when it’s bad, the left one then starts burning. Then when both left and right are bad the left shin starts burning! Mostly it’s the right forearm. The burning sensation moves around and goes from feeling like a sunburn and very general, to a red hot poker being pushed into one spot. Fun stuff.

    So it’s April, I give up and call the neurologist and get a rather quick appointment. He listens to my story and says he fears I may be transitioning into MS. orders a brain and spinal MRI, but says one strange thing that has been bothering me ever since. He said if he sees anything on the MRI he doesn’t like, he will call and have me come in for a 3 day solumedrol treatment before my follow up results appointment. That was kind of scary to hear I put that way. Especially since my insurance mandated the MRI had to wait a minimum of 2 weeks before they could do it. MRIs are May15th.

    Anyways, that went way longer than I expected. I’m sure I missed some points but it’s the first time I’ve actually written the entire story out. If you’re still reading, I’m amazed. Thank you, and have a nice night.

    #2
    I meant “afferent”pupillary defect, but saw no way to edit.

    Comment


      #3
      Hi Locoelectrician ~ Welcome to MS World

      Originally posted by Locoelectrician View Post
      Anyways, that went way longer than I expected. I’m sure I missed some points but it’s the first time I’ve actually written the entire story out. If you’re still reading, I’m amazed.
      Actually, I found your writing to be quite engaging - thanks for sharing your story with us.

      If I'm reading your post correctly, it looks like your only symptom for (about a year or so?) was optic neuritis. And then other symptoms began showing up later.

      Sounds like you have a good neuro and he is proceeding with more tests, now that there are additional symptoms.

      Your MRI testing is not that far off, less than two weeks. If there are lesions which show inflammation, the IVS treatment will probably be administered.

      Let us know what you find out. If you are diagnosed with MS, we're here for support.

      If you have any questions, just ask and we'll be glad to help, if we can.

      Good luck and wishing you the best.

      Take Care
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Yes, my only symptom until recently was optic neuritis. Although I believe it is now optic nerve atrophy as I’m told the damage is permenant and will never be repaired. My understanding is that optic neuritis is when the optic nerve is inflamed and what I now have is the result of the nerve being starved for oxygen for too long.

        Comment


          #5
          Originally posted by Locoelectrician View Post
          Yes, my only symptom until recently was optic neuritis. Although I believe it is now optic nerve atrophy as I’m told the damage is permenant and will never be repaired. My understanding is that optic neuritis is when the optic nerve is inflamed and what I now have is the result of the nerve being starved for oxygen for too long.
          Locoelectrician ~

          I'm sorry to learn that you may have permanent eye damage. That must be very difficult for you (or anyone, for that matter).

          My most difficult eye issues are not so much with my vision, but with my eye muscles, causing occasional nystagmus, difficulty focusing, etc.

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            I’ve never heard the words you used before, but you just described what I’ve spent the last year trying to put into words to no avail. My right eye is getting progressively harder to focus on things. That explains why I can pass an eye test (superior contrast) but can’t look at things on store shelves. Thank you. I overlooked the fact that there is more to vision than just receiving light.

            Comment


              #7
              Originally posted by Locoelectrician View Post
              I’ve never heard the words you used before, but you just described what I’ve spent the last year trying to put into words to no avail. My right eye is getting progressively harder to focus on things. That explains why I can pass an eye test (superior contrast) but can’t look at things on store shelves. Thank you. I overlooked the fact that there is more to vision than just receiving light.
              Yes, besides the optic nerve which is responsible for vision, there are other cranial nerves that are responsible for our eye muscles, which control the coordinated movements of our eyes.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                I don’t seem to have any trouble with eye movement, but definitely with focus.

                Comment


                  #9
                  Hello Locoelectrician and welcome to msw. Sorry you are having a lot of problems with your eyes. When I had optic neuritis I had blind stops in left eye. I know how troubling it is. Thankfully mine cleared up.

                  I hope you find a dr. that may can help you and please let us know what you mri result is.

                  Wishing you the best.
                  God Bless Us All

                  Comment


                    #10
                    Originally posted by REG53 View Post
                    Hello Locoelectrician and welcome to msw. Sorry you are having a lot of problems with your eyes. When I had optic neuritis I had blind stops in left eye. I know how troubling it is. Thankfully mine cleared up.

                    I hope you find a dr. that may can help you and please let us know what you mri result is.

                    Wishing you the best.
                    Thank you.

                    Comment


                      #11
                      So I have a bizarre update and my first actual question.

                      I woke up up Friday morning and for the first time in probably two months, my arm didn’t burn. It’s now late Saturday (early Sunday) and it hasn’t burned at all since Thursday. Like someone turned off a switch.

                      Now or for the question. I am in no way hoping for, or looking forward to a MS diagnosis, but I’m curious if current symptoms go “real time” with MRIs. Meaning, if you get an MRI while experiencing symptoms like your arms being on fire, will the results be different than if they are not? I’m hoping for some kind of answer from my neurologist and fear it would be quite frustrating if he shrugs his shoulders and says let’s do another one in six months. I hope I worded that right. It’s been a long day and I’m exhausted. Thanks.

                      Comment


                        #12
                        Hi David ~

                        Originally posted by Locoelectrician View Post
                        Now or for the question. I am in no way hoping for, or looking forward to a MS diagnosis, but I’m curious if current symptoms go “real time” with MRIs. Meaning, if you get an MRI while experiencing symptoms like your arms being on fire, will the results be different than if they are not?

                        If your burning was caused by an MS relapse or flare up, and you had the MRI during that time, the MRI image might show a lesion that is inflamed (bright spot indicating inflammation). If the relapse or flare up ends, the MRI image might reveal a spot, or scar.

                        However, MRI lesions don't always produce physical symptoms. And likewise, sometimes symptoms can't always be traced to any particular brain lesion.

                        Also, there are some MS symptoms that are not present at all times, and they do come and go.

                        These symptoms sometimes show up or worsen with fatigue or overactivity, anxiety or stress, a virus or infection, or when we have an elevated body temperature.

                        Sometimes they just appear and disappear for no particular reason, and are not necessarily a relapse or flare up.

                        So now, I sure hope I haven't caused you more confusion. MS is kind of complicated to understand.

                        Your brain and spinal cord MRI appointment is only about a week away. Hopefully you will get answers.

                        Take Care
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Tank you for the information.

                          Comment


                            #14
                            Welcome David. Glad to hear the burning pain went away. KoKo gave great explanation of MRIs and lesions.

                            One thing you may want to discuss with your neurologist:. in the absence of a diagnosis for MS but prior diagnosis of optic neuritis, would he diagnose as Clinically Isolated Syndrome, and if yes, thought on starting a DMT?

                            There are studies that show when clinically Isolated Syndrome, there is benefit to starting a DMT, both delaying time to full MS diagnosis and decrease in severity.

                            Good luck with your neurologist.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #15
                              I’ll be sure to ask him. Thanks.

                              Comment

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