I think I had Miller-Fisher

    • April 27, 2011 at 8:30 am

      Hey all

      The more I read the more I think I had MFS.

      Did anybody else have it and how long until your balance was restored?

    • Anonymous
      April 27, 2011 at 1:46 pm

      Emily was 1st dx’d with GBS/MF due to cranial nerve involvement. Her diagnosis was changed to CIDP w/cranial nerve involvement after a relapse. Did you have an MRI w/contast of your brain? That would show inflammation of the cranial nerves & help with a diagnosis.

      I met a teenager who had MF when she was 6 years old. Her mother said she was in the hospital for 20 days & received 10 IVIG infusion (every other day). When she left the hospital she had no residuals. The only lasting effect is she still does not have reflexes.


    • Anonymous
      April 28, 2011 at 10:42 am

      I am sure you have read back on the MF forums.

      Do you have any double vision problems? That affects your balance.

      How long before you completely regain your balance? Good question! Just like all our GBS symptoms – it depends. Everyone is different. I used to be a very “well balanced” person. It has been so many years, now that I just don’t think about it any more – I have adjusted my habits to be more careful and cautious.

      We don’t seem to get many firm answers, here. We just find that we are not alone.

    • May 4, 2011 at 1:17 pm

      hey kelly and alma

      thanks for the responses…..I did have double-vision but that’s better now….I am still trying to regain balance, if I close my eyes I get the feeling I’m floating-in a nauseating way…..new one, I don’t know if this was caused by rainy weather, but I have been having that feeling where you are rising in altitude, your ears ‘fill up and pop’…does that describe it??? it’s all connected to nerves right???

      anyway, thanks for sharing

      I hope you can all feel some good today:)

    • Anonymous
      May 5, 2011 at 11:00 am

      There is sometimes a very thin line between regular old GBS and Miller-Fischer’s variant. GBS sometimes doesn’t want to get pigeon holed. From what I understand, the difference between the two has to do with where most of the damage or most of the symptoms occurred. If it mostly in the head and face, then it is Miller Fischer’s variant. In both cases, the immune system’s attack was probably throughout your entire body.

      If you want to tell people you have Miller-Fischer’s variant of GBS, I doubt anyone will give it a second thought. Most people haven’t even heard of GBS, much less MF, and those people who are really smart about GBS know there is a pretty blurry distinction between the two.