Originally Posted by NeuroNixed Craig

Ironically Garritty, you are talking and people are hearing. Just maybe not listening like we would all like. Your posts have not fallen on deaf ears as there are a few who actually participate with proportionally more lurkers than posters as on any forum.

If you've already not noticed, it will soon become apparent those of us with an SCA diagnosis are relatively rare compared to say MS. When I was diagnosed with SCA and Cerebellar Degenerative Disease with Atrophy, I had to do a great deal of research just to find reliable information. Interestingly, the people in the UK and Japan are far more advanced in their understanding of this disease than western medicine in the US.

I totally relate to the opinions of neurologists believing we are faking for attention or whatever. I've since come to the conclusion it is a defense mechanism on their part because of their obvious lack of knowledge and experience in this area. I've been struggling with symptoms for over 11 years now. I've been diagnosed and misdiagnosed four times and throw in the mix experiencing and unrelated brain stem stroke threw the neuros into a tither because they didn't know what symptoms to treat and which were they related to the stroke or the disease.

What they don't realize is simply because they don't have solid smack-you-in-the-face organic support of the symptoms is no reason to disregard the patient's complaints. They like to pigeon hole patients because that's what they're trained to do. 98% of their practice includes this methodology because they are in an area where cure does not exist. I no longer even deal with neurologists or any other specialist other than eye and GI. The story is always the same, "You are a very complex and complicated case. There is nothing more I can do for you." I've become very good at detecting the frustration in their voice as they would much rather treat a patient who is going to respond and be able to be diagnosed.

We don't fall in that category so don't waste your time trying to convince them of anything. Either they can or cannot provide assistive treatment and I don't mean loading us up with narcotic drugs keeping us in a stupor. I drew my line on that back in September and will deal with the discomfort and pain to "Live Life On My Terms In Spite Of Adversity."

In closing Garritty, you are NOT alone and people are reading your posts. However, I am unclear as to what you want from this forum. Are you looking for a place to vent, ask questions, compare experiences, research or what? I can however, provide acknowledgment of your situation, affirmation of your symptoms and feelings and empathy with all you encounter. BUT, I do not have all the answers.

I hope this affirms you are not talking into the abyss. You're close because with SCA and Cerebellar Atrophy patients there is no abyss but the bottom is really down deep.