3rd MRI

I was diagnosed with ataxia 10 years ago. I had a MRI which showed atrophy in my cerebellum, as well as several other tests and blood work. Therefore, due to the process of elimination, I received my diagnosis. I had an MRI 5 years ago, which showed a bit more atrophy. Recently, I had another MRI, as it’s been 5 years since my last, and I have more atrophy. I guess I’m not totally surprised, as my symptoms have progressed. I do feel a bit sad though, and wonder if it’s even beneficial to have an MRI every 5 years at this point? Maybe ignorance is truly bliss…,ha! I’d welcome any thoughts…,

aw.. sorry to hear that Rose.. I personally feel that I don't want any more tests but some might say that these observations of progression help with compiling statistics for research.

It does depend how you feel about it. I wouldn't mind so much if I was offered therapy and support .. I think you told us that you do get that where you are.

It's difficult to keep smiling through it all but you usually sound quite upbeat .. I hope you will soon find a pleasant distraction. Hugs, Patsy x

Hi Rose,
My honest opinion is to avoid MRI’s in future. As you feel progression why go through the process of a MRI? It will make any one sad and I happily admit Ignorance is Bliss!!! My feeling is be happy for whatever faculties are our strength and move on. As there is no cure for our ailment why make ourselves unhappy as the MRI gets us no where. Finally we listen patiently to the doctor and it only disturbs our mental strength. Stay positive and anchor hope. Good luck always. Will pray for you.

Hello, Rose,
So sorry to hear your news!
I agree with both Patsy and Nan.
If the MRI does not help the doctors for a possible treatment, then why have them?On the other hand if they allow more help with therapy to keep you in shape and cope better with ataxia, then go for it.
Yes, ignorance can be bliss. Too much knowledge can be scary and sometimes, it is better not to know.

You have shown that you are a very positive person. This will help you, no doubt. I wish you the very best. hang in there.
One more thing. As Patsy mentioned, if your results help research for ataxia, it might be a reason to keep having them. Some rare diseases have registries and they ask patients to fill a questionnaires every year to help with research. This is worth it, in my opinion. I belong to one of those registries for another rare disease and in the last 20 years, enormous progress have been made in understanding and making new medicines to help, if not cure, with treatment.
You may want to check this out with your doctor.

I just did a search and there is a registry for ataxia. Check www.national ataxia registry.org

The more patients they get to study, the more info, and may be the faster the research…


Hi Rose,

The same thing with me. My last MRI was last month. Very sad. There was nothing left of my cerebellum. The one before that. 5 years ago wasn't that bad. No MORE MRI's. Why? So sorry your feeling down Rose. It is very sad. But for me. Its a month later and I am feeling better. Or I should say. No I wont say it. The funny thing is. 2 weeks ago some people were talking about the brain. In detail. And I just said. "Well I really don't have a cerebellum" I guess you had to be there. Ha! Rose as you always told me Ataxia is sad. But it wont get us!

Hi Rose!

I've had 2 MRIs, about 10yrs apart. Unfortunately the first one had been 'scrapped'

so no comparison could be made. But since my symptoms had increased it seems

there would have been more atrophy visible anyway. If it would contribute to research

I would probably have another one, but I don't know if I'd want to know what it actually

showed. At the moment I feel fairly 'up beat' and think 'seize the day'! xB

Sorry that depressed you! I think of it as just a mile marker for me. I now am getting one every 2 years. I had total of 5 MRI's now. The first two showed atrophy, and the last 3 showed no more degeneration of my cerebellum.

I really feel it's from my life style change. Nutrition (seems to simple but it challenging at times), exercising (Cognitive and body), emotionally fit and total surrendering (to my Higher Power which I call God). Keeping things well balanced as much as possible, whenever possible.

I see MRI's as just a tool to help me be able to tweak things and find out if they are working or stop me from doing things that can be possible to help my health while having this ataxia.

I'm not saying that we are in control of this ataxia. But I know that I can help my body better handle what comes with my ataxia but we are in control of what we put into our body. Whether it be nutrition, mentally, physically or emotionally. I figure Garbage in, garbage out!

To me it's just a waste of my energy to get upset and not use it for my good. I figure it's taken to show where I am at, so there are two ways of looking at it. :0)

This is EXACTLY my story. I was diagnosed in 2003 with degenerative Cerebellum. The Neurologist who I see did a follow-up MRI after 5 years and this also like yours showed a bit more atrophy. My Neurologist said my Cerebellum is roughly 40% to 50% in size compared to what it should be. As far as another MRI goes,(every 5 years) its really up to my Neurologist. By that I mean that insurance will not pay for it unless she orders it. And she also told me that there are some other factors besides direct Cerebellum size that may cause issues or symptoms. I have been slowly but steadily getting worse but the MRI didn't show a huge change from the original. It did show a bit of a change as I indicated earlier but she told me that the muscles and nerves might just be getting wrong signals, causing decreased physical abilities. I think , then, that what goes on with us physically is a better indication of where we are at. Just listen to your body, stay as active as possible, and always maintain a positive attitude and sense of humor. Stay Strong!:-)

Guess what an MRI shows degeneration of the Cerebellum


Isn’t that simply a definition of C. Ataxia

I dont bother to monitor as well as endure it !



Thank you for all your comments! Everything everyone said has meaning, and I appreciate it so much! I'm feeling better now. I don't know why I was so sad over the results, as truth be told, my symptoms HAVE progressed. I must have been in protective denial, if that makes any sense. I'm strong and resilient and try to have a positive attitude! At least I know I have a brain...,ha! I'll just keep exercising, attending pt and eating healthy, as that seems to help me the most! I have an appointment with my neurologist on Monday and have some questions to ask. Thanks again for your support and understanding..., ;o)

Chin up Rose
Not like you to be down
Spit spot best foot forward

Thanks so much Loz! You're so right, it's not characteristic of me to be down! Onward and upward, even if I'm wobbly...,LOL! ;o)

Hi Rose I have the same degeneraation.

I have only had one MRI about 5 years ago.It showed cerebellar atrophy. I think its inevitable we feel sad as we progress and can't do the things we loved but the battle is in our mind.

I think we need courage to carry on.Ataxia may have some of the body but in my case it doesn't have the mind.Sounds as if you are doing the right thing.As John says "Stay strong".

Hi Rose - My point of view is to do things that you enjoy and enjoy the things that you do while you’re still breathing…even if some things might be more challenging than others to enjoy.

No matter if we’re hit by a bus tomorrow or die in a different way (spoiler alert to some: we’re all going to die), it’s important to at least attempt to find the joy in everything we do/how we choose to spend our energy - whether or not you decide to have an MRI.

Thanks for your kind words Marie! ;o)

Dear Rose
I am right behind you