MILLER FISHER SYNDROME

My husband was diagnosed with Miller Fisher Syndrome some five months ago (a variant of Guillane Barre Syndrome and Bickerstaffs Encephalytis). Although he is a little better he is still having problems with his balance and is very exhausted. Two weeks ago he had a course of immunoglobulin and since then he has felt worse - completely exhausted and very weak. Anybody out there know anything about this syndrome or about the effects of immunoglobulin?

5 Replies

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  • Sorry to hear your husband is having such a difficult time. Is his condition related to coeliac disease or problems with gluten?

    Are there any other sites on HU that might give you some information?

  • I'm really sorry to hear about your husband, now I think that you need to be asking your Dr some questions here, as it should be getting better after the course of immunoglobulin I'd have thought.

    Here's a link about immunoglobulin, including side effects:

    primaryimmune.org/treatment...

    So I think that you need to be chasing this up to keep your husband on the Dr's radar over this.

    And good luck

  • Thank you Jerry for your reply. I have read the article you suggested and found it very interesting. We are pursuing things further with the consultant who doesn't feel the immunoglobulin treatment will have caused his exhaustion and is doing further tests to rule out any other problems.

  • Hi my name is Brian and suffered from. Guillian Barre back in 1999. I had treatment of immunoglobulin which slows down the nerve damage and certainly assisted with recovery.It can a long recovery because everyone is different. It was almost 9 months before I started back work and it can a few years to be back to some normal feeling after the damage this can do to nervous system. I did feel tired and lethargic over the period of treatment

    but did become stronger. I hope your husband recovers and back to his old self again try and keep positive thoughts as there will be some days that there is no end. The most painful thing I had was the constant pins and needles but with me it did surpass after time.If your looking for any support try the Guillian Barre website there might a local person who visit and has experienced this as all support people have had experienced this condition.

    All the best for you and your family

    Brian

  • Thank you Brian for responding. It sounds as though we are just going to have to try to be patient for a bit longer. It seems as though tiredness and lethargy are a big part of this illness. I hope you are fully recovered now.

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