How is my Ataxia different?

EPISODIC ATAXIA A RARE NEUROLOGICAL CONDITION

Episodic Ataxia is so rare affecting less than 1 in 100,000 people of the population. Most people do not UNDERSTAND the illness due to it’s rarity and most have NEVER heard of Ataxia.. My ataxia is one of the most rare and unusual types where one doesn’t experience stable progressive symptoms BUT waves of symptoms from looking “normal” with having no symptoms then suddenly severe debilitating symptoms.. sometimes even “mild” symptoms. While even some Episodic Ataxias ARE progressive and many develop a “stable Ataxia” in between episodes or a “progressive “ one in between interictal signs can be evident in many people with Episodic Ataxia, as it is in my family but even apart from my family as ataxia runs in my family, mine seems a bit different and according to the neurologist appears mainly just Episodic rather than a “stable “ Ataxia in between episodes associated with cerebellar atrophy (again different than the others) which leads to a question as to why I would inherit a different Ataxia?! And one that isn’t caused by cerebellar atrophy which is often seen on an MRI.. there could be MANY causes of the same condition but based on observation from the neurologist and the symptoms I still have Ataxia. There is still a lot people don’t understand about the condition.. I still find certain physical tasks difficult constantly and I’m constantly tired. When I tend to do to much or even physically much in a day, I bring out my symptoms, but I’m getting my own wheelchair which will be here by the 21st of the month. I’ll be able to do more without the constant need of rest before doing something else and I’ll have one with me if my symptoms become severe and I’m having some difficulties and with walking
#episodicataxia
#ataxiaawareness