NeuroTalk Support Groups - Right forum? Sensory Ataxia

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- - Right forum? Sensory Ataxia (https://www.neurotalk.org/movement-disorders/103913-forum-sensory-ataxia.html)

Right forum? Sensory Ataxia

I was diagnosed with Sensory Ataxia caused by hypothyroid disease on Sept 11. I have had problems since October 2005. Not sure if this is the "final diagnosis" or not. I will have an EMG soon, my neurologist's office is scheduling it as I type. I also have orthostatic hypotension and have a tilt-table test next month.

It was a long, very difficult journey to get diagnosed. Sometime I will share bits of it--right now I need to think forward. It definitely is not in my head, as several doctors said--lousy exams because they had decided my diagnosis before seeing me.

My legs are the most affected. I have the "equine-gait" and loss of some reflexes and response to stimulation in my feet.

At times I wonder if this started in childhood. I was extremely clumsy, so much so that my mom had to set up an obstacle course on the driveway so I could learn to run without crashing into people and things. I was the kid who couldn't do any sport--but not for lack of trying. Just makes me wonder....

Not sure what else to put in this post--so will stop here. Thanks for reading and responding--it is appreciated,

lifesaver54

I have static ataxia from a stroke I had back in '96. ("Clumsy" is my middle name!:rolleyes:) My gait has gotten much better over the years; when I think back I had to relearn how to walk. (I used to all the time, and some of the time I still walk like a drunken toddler!:D )

sue984:sunchair:

I think I'm understanding what you guys are talking about but some of it is new information to me. First off, "WELCOME" to NeuroTalk, a great place to meet new people who can relate and support you.

I have a variety of Dyskensias, Dystonia, both diagnosed since November of '09 creating very entertaining involuntary movements. I've had RLS since 2000 and it is quite severe treated with the maximum dose of Requip.

Now the ataxia is cerebellar related with a diagnosis of spinocerebellar atrophy and cerebellar degenerative disease both with ataxia. When trying to get around in the house without using my power wheelchair and only my forearm crutches, my wife says I look like a very drunk Captain Jack Sparrow. Personally, I consider that quite a compliment.

Outside the house is completely different racked with too many challenges. I didn't recognize the names of the ataxia you guys mentioned but it doesn't matter in that we are all actually experiencing very similar challenges.

Keep us informed on your journey. You may find we all have more in common than expected.