I am hoping that somebody will help me underside what is wrong with me.
I have been diagnosed with Episodic Ataxia type 2 late onset three years ago. The genetics tests however have turned out to be negative and I never had the typical ataxia gait not even when I get episodes. I just swing as if I am on a boat. I feel as a drunkard, I become complete clumsy and cannot coordinate thought and speech. Also my manual capabilities become difficult, as well as mental ones ( concentration, memory) and especially sight and fatigue.
Diamox which had been very useful for me in the past three years now is becoming ineffective. I have reached 750mg a day in 3 years.
Now the sensation that I am rocking on a boat, and that my brain is, which is my main problem, does not quit me and again I feel safer walking with a stick.
I am in the US from 9 months now and a new neurologist I have consulted recently thinks I may have mal de debarquement. A very rare syndrome.
Can anyone with episodic ataxia type two help me understand if they have my same symptoms.
Thank you. I am always more frustrated. This thing comes and goes. I mean I can lead a normal life for months and than there without any reason I am back rocking and fatigued ecc.
I love you all.
Hi Boat, here is a site that may help clear up what Mal De Dabarquement is vs Ataxia vs Peripheral Vestibular vs Central Vestibular (cerebellum, brain stem). You can have both peripheral and central vestibular issues. I have the floaty boatys 24/7. Mine is from brain, brain stem(primary reason) and peripheral neuropathy. There are some good rehabilitative programs out there. Be sure to listen to some of the videos on Vestibular.org. Great information and you won't feel so alone!
Dear Blueberry thank you.
And sorry for not having gotten back to you before.
I ended up in hospital again. Once my floaty boaty as you call it was only episodic but now it is a month that it has become non-stop. Mine is connected to brain too, I have a cerebellar hypoplasia which has been connected util now to episodic ataxia type 2. Then this Mal de Debarquement has also been suspected recently. My imbalance in progressing very fast.
I have started looking at the web site you indicated. I hope I will find some sort of solution somehow somewhere.
Thank you for your support.
I have EA2 and my symptoms are daily now. I use walking sticks and/or a cane for support. I feel like I am rocking at times, but mostly have terrible gait problems. Diamox has helped with my slurred speech and intensity of episodes. Am on 500 mg daily of Diamox and find my body is adapting to the drug and I am more and more unsteady. I would love to get episodes just monthly. I do not know of mal de debarquement but will research it now. I am grateful that my episodes come and go and are not constant.