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.

Originally Posted by NM_Dewey

Craig,

I went through with the genetic testing mainly for my family. My grandmother (85 y/o) has terrible balance issues and slurred speech, my mother(64 y/o) has balance issues but no symptoms, older brother (41 y/o) has had an MRI that shows the cerebellum atrophy with balance issues. I am lucky to get the painful neuropathy, balance issues, speech issues...yadda, yadda, yadda. I'm 40 and thinking back have been experiencing symptoms for much longer than I thought. I've been experiencing hand/leg tremors since I was young. Based in this solid family history, I fully understand why you had the testing. That was good thinking on your part because now your family has confirmation. I also notice this disease does not appear to affect the life expectancy within your family with your grandmother still living at 85 years old.

Unfortunately by getting a specific dx I now have to deal with insurance and all those other things. Isn't that just a lovely kettle of fish to deal with!!! My long term disability insurance has a "pre-existing" existing clause. Since I've only been in my current job for 10 Months and have had dr visits and testing prior to starting the job the say I have a 'pre-existing" condition, though, we had no dx. OMG! I experienced the exact same situation. Although, I did receive the 6 months of short term disability income, which got me through until my Social Security Disability Income started. My current employer tried every legal trick he could come up with to get me approved for the long term but to not avail. Very frustrating. I've read cases where people have fought the insurance companies on these clauses and won...but at what cost? My understanding is when you are diagnosed is not the issue. It's the fact you received treatment for symptoms etc. then confirmed later by a diagnosis prior to employment that nails their "pre-existing clause" to initiate. I know, BUMMER!

Thanks for your reply. Good to know others are out there...at times it gets very lonely feeling as if you are the only one facing this terrible disease. Look Dewey, you at NOT alone so feel free to contact me any time either via PM, email to my home, or even telephone or Skype. I've already been through all of this exact same stuff and will be happy to provide whatever information I can to assist you.

Peace be with you bro.
Craig

Dewey