MRI Results - add&read

What were your MRI results at your first major visit?

Add more if significant changes…

Were you able to get through the MRI easily, or did you have issues?

Do you have an Official Diagnosis?

*getting mine and adding summary soon brb


I had an issue with MRI just at the end I wanted to scream or something. It got over with at just the right time. I just don’t do good with MRI or pet scan. Jerry

My very first MRI was to check for an aneurism behind one of my eyes, despite having eye problems none was found. I’d requested the MRI because of close family history. At the time, I was experiencing symptoms consistent with the onset of ataxia but these were ignored by a Neurologist, despite the fact that the MRI showed pressure on my Cerebellum. 11yrs later I had another MRI, because I’d started having falls. This time it showed distinct Atrophy, and along with symptoms, led to a prompt diagnosis of Cerebellar Ataxia.

Both times I found the experience ‘bearable’. The machine itself creates a very loud noise, I was offered headphones and music to listen to, which helped :slightly_smiling_face: I’ve since been told that wearing additional earplugs helps even more :slightly_smiling_face:

Recently after an MRI, it took me several minutes to adjust to being brought upright again. I pre-warned the Radiographer this would happen, just in case… Lying completely flat brought on BPPV which took some time to settle down but eventually wore off :slightly_smiling_face: There was no dramatic change in Atrophy. My diagnosis remains the same, Idiopathic Cerebellar Ataxia :slightly_smiling_face: xB

Hi Louise,

I got the mri scan on the first visit of a neurologist…I live in England, so on NhS it took 3 months to get there…another 2 months to review, although my gp notified of a result…was a bit mad, as received the same letter, and not knowing more, made me using GOOGLE (never spook yourself!) and after a few shouts by my relative, got an appointment begin… of October 2017…and on the day, just to be 100 % sure a genetic blood test was made, which surprisingly came back within 3 weeks, and diagnosed in November 2017…Deep down I knew the result as this condition inherited after my paternal grandma and father…

Ladybird thank you for sharing that, it helps me sort things out a bit better.

Where in England are you?

How long ago did you get your genetic testing and diagnosis?

xo Louise

I’m working up the energy to get my OWN summary of findings out and will want opinions :wink:

My first was my initial hospitalization taken in by ambulance after a week of treating sinus infection after CT showed “nasty sinus infection”

However when taken in to another nearby hospital and treated the previous ER visit and treatment wasn’t really mentioned much as if thit sinus infection theory had been wrong and it would “do this”.

Vomiting Vertigo and Upbeating Nystagmus - terrible state I asked for a catheter thewouldnt give me one.

OK MRI TIME … sure I can not get in that machine.

Lots of medication later and vomiting throughout.
No tumor

  • Significant Atrophy to the Cerebellum *

and that’s close to where I am still. My symptoms are so severe with positional vertigo and nystagmus 4 years after being released bc I couldn’t stay ANY longer their unsureness after so long left me hopeless and wanting to be MOM
xo Louise

I am in Liverpool. I got the genetic test done in October 2017, and was warned they are snowed under requests for screening, so not to expect anything fast. To my utter surprise, there must have been some kind of a gap,as they processed it within 3 weeks…and got fully diagnosed begin. of November 2017…The confirmation of the hereditary sca2…

.Since then applied for pip, was greatly undervalued, basically appealed a decision of a basic rate for mobility…waited all April, 11th hour they settled the appeal without going to a tribunal…since then went tor a motability car…in the process of getting one, might have to go to a different dealership, as the specific requested colour has to be ordered, and the wait is too long. My hubby drives, I cannot. But also as a part of the sca2, my eyesight affected, as very shortsighted, but mainly my reflexes are far too slow, and that’s even before I was diagnosed…like 20 years back…