GBS and MFS March 2006

Still have double vision strongly in my peripherial vision that I notice although the neuro-opthomologist says it is still in my forward vision too, but my brain has compensated and it is slight. I can tell my eye sight is not what it used to be – but it has been stable since April 06.

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[*]Stress causes all of my symptoms to flair and be noticed. My left side is far worse than right.
[*]Left eyelid droops always, worse when tired
[*]fingers on left hand tingle, especially pinky and thumb
[*]left foot is mostly numb and tingly
[*]when really tired I feel it in my lips and left side of face (numbness and tingle)
[*]balance is still off and I tend to stumble on my own feet more than before GBS
[*]Fatigue to the point of exhaustion. While this seems to come and go- when it comes it is bad. This week was one of those weeks.
[*]While I regained a couple reflexes in both elbows, I am still missing all reflexes in knees and ankles on both legs.
[*]Shoulders, neck, arms and legs get tired easier than before. I’m still very active, but I do try to not over do it. I won’t let this STOP ME!
[*]I also will get the odd sharp pain
Oh – i forgot the burning sensation in my feet when I exercise – walk or ride bike – it is like they are on FIRE!
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My onset to Miller Fisher GBS was March 2003.

My residuals; Sensativity to light and brightness
Sensativity to loud sounds
Severe headaches
Burning, tingling, numbness is constant in the head,face, hands, legs and feet. At times there is numbness to mouth and also drooping of the mouth.

Drop foot in left leg still wearing a foot brace and walking with a cane. About a year after onset I was also diagnosed with Raynauds which also causes sensativity to cold and heat, not being able to determine temperature control in the hands and feet.

Still have a very hard time climbing stairs, walking, sitting or standing still have problems there.

I have anxiety and fear of what is going to happen next, that thought is constantly on my mind. I’m still keeping it positive, I like helping others, I’m still moving forward even if it’s at a slower pace! And I tell others as well to keep positive, strong and most of all keep laughing too!