Totally Confused

[Stu44]

Hi

i have been giving a symtoms called Cerebellar Atrophy Ataxia, my neurologist said this will get worse through time, and sent me to a load of referrals..

I recently went for a MRI and received the result tat everything has stayed the same as in 2013 when i had my last MRI.

The problem with that is each referral i attend come back with something, like I attended a respiratory clinic to see if i had an sleep apnea, which i didn't but he did recognise that there was another problem there which was thought to be neurological, then i attended an urologist and im waiting on further test cause a problem showed in the first test, then i attended a physio which she proclaimed my balance is one of the worse cases she has seen. These problems all seem to happen within the last year, so how can the neurologist say nothing has changed since 2013.

Can symptoms progress this fast or could something like stress bring them on worse.

I go back in february to see neurologist so it would be nice to ask questions, does anyone have suggestions.

Thank you

[wobblybee]

Hi Stu😊

The MRI would have confirmed that the cerebellum had shown no change, no further atrophy, if that's what was seen originally. It's not always easy to pick up on what a Neurologist actually implies.

Some symptoms can benefit from therapy, so referrals are useful. Neurophysiotherapists are more knowledgable regarding problems with SCA.

In the past, my symptoms could fluctuate and be totally unpredictable, I found it difficult to commit to weekly arrangements, never mind long term commitments. This is likely to be the case with many people, it's frustrating and inevitably causes stress, which in turn makes symptoms harder to deal with.

Most of us realise that our symptoms will become more challenging, it's the nature of the condition. But, even a Neurologist would be hard pressed to predict an exact path.

It's widely acknowledged that after giving a diagnosis, and saying the condition is progressive and degenerative, a Neurologist has little or anything further to say. Surprisingly it's actually left up to the patient to do their own research into the condition. See ataxia.org.uk and ataxia.org 😊xBeryl

[Stu44 in reply to wobblybee]

Thank you for the reply wobblybee

[neta]

Hi Stu,

I also took an MRI recently and the verdict was that not much has changed with regards to atrophy, since 2011. I, too, am thinking how that be if I feel so much worse? Very confusing.N

[Stu44 in reply to neta]

So I'm not imaging things neta.

[neta in reply to Stu44]

U r not not ....very weird N