Advice please

Hi all

Well I am at the end of my tether...10 years and the ssymptoms are getting worse. Started from nowhere when I was 35 with light headedness and loss of balance, listing to one side when walking like a drunk.

Haven't officially been diagnosed, my last scan in March showed 4.5mm tonsil ectopia, so minor it isn't a Chiari. Also, because the tonsils are rounded and no CSF blockage my symtoms are in my head literally...according to the last neurologist I seen.

I have a constant headache, like my brain is bursting, I am so dizzy, I am almost falling over, even when I am sitting feel like I could fall.

I am having major problems in keeping my head still, I am like a cartoon character with a bobbing head. Things like going to the hair salon is a no no, I am over due for my dental appoinment as can't lie back, walking is a joke as balance is worse than ever.

So desperate I am thinking of having a private up right MRI scan which in the UK is £600!!

Any advice please on anything...

Helen, in addition to dysautonomia, ataxia is also a possibility. I believe a definitive diagnosis can be made for ataxia by getting a lumbar puncture. We have an ataxia community listed in the righthand column, if you wish to join for more information.

Mayo has a good informational site about ataxia, Beeba: http://www.mayoclinic.org/diseases-conditions/ataxia/basics/definition/con-20030428