Originally Posted by NeuroNixed Craig

Hi NM_Dewey,

I read your original post and thought I had written it. I give you credit for going the genetic testing route. From day one when suggested by my neuro at that time, I refused on principle. I do not trust medicine, insurance, or government with information that may have a detrimental effect on my children and grandchildren, i.e. "pre-existing condition." Not to mention I would have to pay almost $7,000 and it's not covered by my insurance.

I was training for a marathon in Hawaii when symptoms hit. Within 2 years I was dependent on forearm crutches to ambulate. Misdiagnosed twice with two different types of MS, strongly suspected Hereditary Spastic Paraplegia but without a genetic marker test they would not confirm it.

Now, after 10 years for severe and progressive symptoms, the diagnosis is Spinocerebellar Ataxia and Atrophy, Cerebellar Degenerative Disease with Ataxia. Oh! And let us not forget the unrelated near fatal brain stem stroke of December 2008. Docs and neuros went nuts trying to figure out if my symptoms were stroke or disease related. Almost controlled chaos in the ER, according to my wife.

I understand, appreciate, and totally empathize with your situation. Until I find the blue ink stamp on the bottom of my foot with an expiration date, who the h*ll cares what the neuros say. Stephen Hawking has Lou Gehrig's Disease and wasn't suppose to live past high school. What's that tell you?

As our unit motto says from special ops, "Evaluate, Adapt, and Overcome!" If anybody gives you a problem, tell them they are free to go get counseling.

You are NOT alone. Thank you for sharing your circumstances.