well, I have finally "graduated to 2 canes. It's breaking my little girl's heart to see Mommy like this. She was only 4 when I got sick, and she doesn't really remember me any other way. Life has sure cheated her, huh? I'm trying to be the best Mom (and dad) I can be for her, and the guilt I feel for failing her, and my older two children, and now my granddaughters, is staggering! I should BE there for them - but, alas, my body has other plans, and this road God is walking down with me, although unfamiliar, is one I know the Master is taking me on for a reason. I trust in Him and love Him more today than I did yesterday. My Great Physician will heal me as is according to His will and in His time (:0}.

Hello - does anyone hear me when I talk on here? I truly thought I had found a home, somewhere that I could be me, and share with people who KNOW what I am going thru, who feel what I feel, whose bodies are cheating them of health like mine is me. Yet I am talking to an abyss............and that hurts.

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.

THANK YOU, CRAIG! I am not alone, as this website has just confirmed by your response! I needed that. In answer to you last paragraph questions as to what I NEED/WANT from this forum - it's quite simple. I want to know I have kindred souls in this world, SCA people like me. And, I would like to keep abreast of any updates in medical advances that MIGHT ease some of the progressive symptoms.

I, like you, no longer go to neurologists, because I am tired of the doubting looks in their eyes. And, I rarely go to the hospital when I have seizures, or my tremors cause severe side effects. The main reason for that is simple: when I go to the hospital, I end up lying there, seizing, taking my medicine, and the hospital taking my blood. Then I go to sleep.

By avoiding the hospital, I can take my medicine, lay down, and drift off to sleep, and KEEP my blood, as I am DEATHLY afraid of needles. I'll simply stick with my general practioner to maintain my medicines for now.

I am well aware that the symptoms I am experiencing are unlike anything I've ever thought possible. And, in once sense, for me, I've sort of felt like the character in "Phenomenon" - as parts of my brain give out, other parts kick in, and try to compensate, and THAT part of this journey has become quite an interesting discovery.

Keep the faith, and stay strong, all my SCA brothers and sisters. And- thank you again, Craig! God Bless! ~~ Garrittygirl

Hi Garritty,

The biggest challenge is there aren't very many of us out there and those that are don't visit these forums very much. I'm just guessing here though.

I'm with you and only my primary care physician deals with all of my treatment and meds. I like that because there is no chance for confusion having several people involved all with different opinions of how they think I should be treated.

The last two specialists were very up front and told me there was nothing they could do short of "trying" stronger narcotic meds or even electro brain implants. No thank you on all counts. My PCP said he believes the time is well passed for any more specialists and to just make the best of each day. He likes to tell me, "Doctors prescribe and God decides." So true.

I don't know what you've tried to find on the internet but my experience is there isn't a whole lot out there. What I do find is primarily from overseas. In answering you quest to keep up with current treatments and advances, I've found none.

I agree with you 100% as I too avoid any possibility of having to be admitted to a hospital regardless the reason. Last Thanksgiving my doctor wanted to admit me for severe bronchitis possible pneumonia and I made it very clear I would not be admitted. Against his better judgment he prescribed mega antibiotics and let me stay home. The only thing I fear about going into the hospital is everyone wants to get in on the "what's really wrong with him" mentality. After 10 years of that crap, no longer!

I will never again waste my time and energy trying to "convince" a specialist of my condition. Why? It is not going to change anything for my benefit and only feed on their curiosity desire to find the holy grail solutions. Both of which I have NO interest.

Glad you came back. **

Talk to you soon.

God Bless all here, to know that you are not the only one helps so many. My best friends sister has just been told she has spinocerebellar ataxia. I love them all and will do anything to learn how to help. I pray god blesses everyone and one day things will be so much better.

GarityGirl,

Good day! I am in the military and have been researching Vaccines. They originally did an MRI and saw my Cerebellum had shrunk and they were thinking SCA. After telling them so many times that no one in my family had this, they ordered genetic testing through Athena Diagnostics. It proved that all my genes match and r/o hereditary SCA. If you weren't in the military, any vaccines in the last 15-20 years that were suspect? This is a sad state of events and I am emailling an Army SSG that is going through the same process, but, with boys.