Announcement

Collapse
No announcement yet.

Vision problems in SPMS

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

    Vision problems in SPMS

    Hello All,

    I am in an unusual and difficult situation that has prompted me to compose this post in the hopes that my own case should be of interest to others who are in the same boat, so to speak. I am a Canadian but currently living in Munich, Germany, doing my doctorate in political science at the LMU Munich.

    I have MS since 1996 (first attack with numbness in R side), confirmed on second attack in 2000 of double vision. In both instances I was prescribed corticosteroids and the sx vanished almost completely (from the first attack I still have an extremely slight numbness in my R hand). In the timespan from 2000 to 2012 I did not have a single clear cut relapse like the first two. At this time my dx according to the Canadian doctors who had had been treating me was RRMS, which is clear, right?

    In 2010 I left Canada for Germany. I remember visiting a fair or something with friends of my family in the summer of 2010 in Bonn, Germany. I felt tired, even though it wasn't hot, only warm, and dragging the R foot and stumbling. But Once I had rested I was fine again and proceeded to Munich. In about spring 2011 I noticed that my vision was very slightly blurred, though as time passed this would worsen. Then in June 2012 I had my third relapse: pins and needles in the R side, somewhat ataxic gait. I returned to Canada and again had cortisone treatment. This time however, the sx did not vanish as in the first two attacks: the pins/needles went away but the gait problems remained.

    Went back to Munich and saw an MS specialist who diagnosed me with SPMS on the basis of my previous sx, which is absolutely correct imo. At this time, October 2012, I developed Nystagmus and also dizziness when outside. My fatige from 2012 particularly worsened; now even to run a single errand is a challenging endeavor and I cannot run several in a row like I used to even a couple of years ago, it just exhausts me.

    My vision is, however, easily my biggest concern, since I can now hardly read. With the optic neuritis and nystagmus, reading is a trouble - reading on the computer much less than books as I can increase the size of the text on the computer but cannot with books. I use a magnifying bar, which helps to a certain extent but not totally.

    My problem is certainly not helped by being in Germany. I am not a German citizen and do not have access to health care. My insurance is very limited and does not cover MS drugs. For that reason the MS specialist I saw recommended that I participate in the ASCEND Tysabri study, which I am doing. Of course I don't know if I am getting the Ty or placebo as it apparently takes several infusions for the Ty to have an effect. In any case, there is no improvement in my vision as of yet. The doctors here put me on Gabapentin for the nystagmus, theorizing that it may slow the involuntary rapid eye movement that is the nystagmus. I am now on 1500 mg/day and it is not helping me with the nystagmus, only a little with sleeping.

    I must apologize for the length of the post, but I wanted to explain my situation as best as I can. I am wondering if anyone has had similar experiences, particularly with vision problems and with nystagmus and with gabapentin.

    Cheers,
    Mark

    #2
    Originally posted by ratsuchend View Post
    Hello All,

    I am in an unusual and difficult situation that has prompted me to compose this post in the hopes that my own case should be of interest to others who are in the same boat, so to speak. I am a Canadian but currently living in Munich, Germany, doing my doctorate in political science at the LMU Munich.

    I have MS since 1996 (first attack with numbness in R side), confirmed on second attack in 2000 of double vision. In both instances I was prescribed corticosteroids and the sx vanished almost completely (from the first attack I still have an extremely slight numbness in my R hand). In the timespan from 2000 to 2012 I did not have a single clear cut relapse like the first two. At this time my dx according to the Canadian doctors who had had been treating me was RRMS, which is clear, right?

    In 2010 I left Canada for Germany. I remember visiting a fair or something with friends of my family in the summer of 2010 in Bonn, Germany. I felt tired, even though it wasn't hot, only warm, and dragging the R foot and stumbling. But Once I had rested I was fine again and proceeded to Munich. In about spring 2011 I noticed that my vision was very slightly blurred, though as time passed this would worsen. Then in June 2012 I had my third relapse: pins and needles in the R side, somewhat ataxic gait. I returned to Canada and again had cortisone treatment. This time however, the sx did not vanish as in the first two attacks: the pins/needles went away but the gait problems remained.

    Went back to Munich and saw an MS specialist who diagnosed me with SPMS on the basis of my previous sx, which is absolutely correct imo. At this time, October 2012, I developed Nystagmus and also dizziness when outside. My fatige from 2012 particularly worsened; now even to run a single errand is a challenging endeavor and I cannot run several in a row like I used to even a couple of years ago, it just exhausts me.

    My vision is, however, easily my biggest concern, since I can now hardly read. With the optic neuritis and nystagmus, reading is a trouble - reading on the computer much less than books as I can increase the size of the text on the computer but cannot with books. I use a magnifying bar, which helps to a certain extent but not totally.

    My problem is certainly not helped by being in Germany. I am not a German citizen and do not have access to health care. My insurance is very limited and does not cover MS drugs. For that reason the MS specialist I saw recommended that I participate in the ASCEND Tysabri study, which I am doing. Of course I don't know if I am getting the Ty or placebo as it apparently takes several infusions for the Ty to have an effect. In any case, there is no improvement in my vision as of yet. The doctors here put me on Gabapentin for the nystagmus, theorizing that it may slow the involuntary rapid eye movement that is the nystagmus. I am now on 1500 mg/day and it is not helping me with the nystagmus, only a little with sleeping.

    I must apologize for the length of the post, but I wanted to explain my situation as best as I can. I am wondering if anyone has had similar experiences, particularly with vision problems and with nystagmus and with gabapentin.

    Cheers,
    Mark
    I have never heard of Gaba for eyes, did any doc suggest oral prednisone, that is what I've taken for eye problems and has helped. I'm sorry you are in a bind insurance wise that is difficult. I am also RRMS dx in 95

    Comment


      #3
      Hello and Welcome ratsuchend! .


      Have you tried looking at different insurance plans?

      http://www.msworld.org/forum/showthread.php?t=121313

      The above link will give you info on where you can get help.

      Feel free to check out the forums, join chats, and post any questions or comments you may have.

      Best wishes!
      When I can laugh at my experiences, I own them and they don't own me!

      Comment

      Working...
      X