Episodic Ataxia

[Pacitto]

Hi guys, yesterday my neurologist Dr P Shar for short, face to face at Sheffield diagnosed with the above. I had undergone many tests, mri, nerve conduction tests, etc. She is amazing and her team. Also discovered an extremely rare gene so rare she wanted to see me to explain. I have to undergo more tests with my daughter who developed Guillian Barrie syndrome and has not recovered correctly leaving her disabled. The Ataxia nurses have been very supportive over the phone since Feb this year.

Knowing there is no cure I have been prescribed Acetazolamide to try and help with the symptoms.

Originally at Salford Manchester a locum neurologist diagnosed me with late onset cerebellar Ataxia and sent me home with no cure and discharged me. I cannot thank all the team at Sheffield enough and even though its a journey for us it's exceptional the care and support they give. ❤️X

[Arlo20]

Glad your getting proper care,so many conflicting opinions from neurologists .

[KiwiBob]

They very good Sheffield Ataxia Center. I can’t praise them enough for what they have done for me.

[wobblybee]

🙂 It’s good to know you were referred to Specialist Neurologists. Unfortunately far too many of us are seen locally as a matter of course, and generally speaking not many Neurologists have any real knowledge about ataxia.