Can you PLEASE Help me with some info on NYSTAGMUS.

[Michael-Paulo]

  Hi there,
  
  My name is Michael de Andrade, I'm 18, and live in Johannesburg, South Africa - I'm a computer Programmer! Well I have Congenital Nystagmus.  I was surfing the web in search of some information on Nystagmus.  I came across this excellent site - so I decided to send this e-mail - and I really do hope you can help me.
  
  Well I know there is no true cure for Nystagmus, But from what I have read it seems that there are little things Doctors can do to improve vision. Now my problem is having to find a doctor here in South Africa - who actually knows about Nystagmus sufficiently enough to help me. Every time I visit an eye specialist - I am told that I have congenital Nystagmus, Astigmatism and myopia. Both Astigmatism and myopia are apparently corrected with the contacts which I wear (-4.50 on the right eye and -6.00 on the left), and feel perfectly comfortable with.  The specialists which I have thus far visited tell me, that nothing else can be done.  My eyes used to move a lot when I was a baby - now they still move, but according to my mom, there has been a remarkable improvement in the past few years. Only when I'm nervous they move even more. I have no history of albinism or nystagmus in my family.
  
  Even if there isn't anything that can done - I would be very happy to meet a doctor who can always keep me updated with the latest treatments - & who can possibly help me a bit. I have managed to get a Learner's license (with the help of a doctors' letter) to drive - but I don't feel too comfortable on the road - during the day I struggle to see some traffic lights and at night I sometimes struggle to see objects ahead of me. My greatest wish at the moment (seriously) is to one day be able to drive comfortably, so that I can become more independent - considering the fact that the transportation system in South Africa is not the greatest.  I just would like to know if there is anything at all that can help me no matter how little that help may be.
  
  I REALLY am sorry to be a bother to you - but is there any information you can provide me with - do you by any chance know of any good doctors/specialists in South Africa that you can recommend to me, whom I should visit, or know where I can get hold of such information - or do you believe that I have to travel overseas to find such a doctor (Honestly!).
  
  Another thing I'm curious to know is - do you believe neurologists can help me?
  
  I will GREATLY APPRECIATE  any information you can provide me with - Please e-mail me at my Work Server - ***@**** so that I am sure to receive your mail.
  
  THANK-YOU VERY VERY MUCH!!
  Michael P. G. de Andrade

[HFHS MD JL]

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Well it sounds as though you are well informed.  It is good to hear that your eye movements are decreasing.  If this is the case you may notice some improvement in your vision.  Unfortunately, people with congenital nystagmus do not usually have normal vision because the visual center never fully develops.  The main reason for this is because the rapid eye movements do not let the light rays focus on the retina correctly.  Some people with congenital nystagmus have more eye movements in certain directions of gaze and these people may benefit from eye muscle surgery to move the eye in the opposite direction of where the nystagmus is worse.  Even in these cases the vision will usually not return to 20/20 but the vision may be improved because the movements are less.  This procedure would only work when there is significant movement in a particular eye position.  Prisms can also be used in glasses to obtain the same effect.
The type of ophthalmologist that would be most helpful to you would be a pediatric ophthalmologist.  I do not know of any in South Africa, however, there must be some in the larger cities.  If you are interested in coming to the US, I could come up with some names, but I suggest you make contacts in South Africa first.
Good Luck
HFHS M.D.-JL