Good specialist experience 😃

[2hot]

I was given the diagnosis of Ataxia two years ago but every other specialist I have seen has queried that along with querying other diagnoses I have had for other symptoms . In the end I was told I don’t fit into a neat box and they didn’t know what my problems were caused by. I was ‘unique’. When I countered with‘Everyone is unique’ they said I was more unique than others! Eg they didn’t know what is wrong. I felt as if they didn’t believe me. Yesterday I saw a new doctor who was very thorough and thinks all of my problems are to do with a problem in the cerebellum. Loads of test to come. 16 vials of blood taken. I may get a diagnosis this time. I actually felt positive when I left instead of feeling I was wasting their time.! Thanks for listening. I hope your journeys are going well.

[wobblybee]

🙂 You’ve previously mentioned a diagnosis of EA2 (Episodic Ataxia type 2)…is that dismissed now

[2hot in reply to wobblybee]

Hi wobblybee, I have no idea. They keep changing their minds. I don’t have the gene so they say not but they don’t know what it is. The general consensus is that there is something going on but I don’t fit in any boxes so there is no definitive answer yet.

[PatsyIpswich]

I sympathise . My diagnosis of idiopathic cerebellar ataxia was 2002 and here I am 81yrs old now using a wheelchair because I can only stand for 2 seconds. However, hopefully, my tests have contributed to a meaningful database to help others in the future. X

[Stagger]

It's very irritating when you hear some things specialists say. Even worse when there are contradictions in diagnosis. Good to hear you are feeling more positive after your last visit to doctor. Don't give up. Get that diagnosis you need and you'll feel much better

[7151]

Ah yes for years i thought i was going nuts i must have had this Ataxie for a least 15 years even friends was nt taking me seriois then my kini said she thought it could be Ataxie then that got thé ball Rolling i had to do lots of recherche ..finalement after loads of scans bllod tests and puncture lumber they have given me a médical term neorophathie ..wow but no cure it is à nightmare Good luck xx

[2hot]

Thanks for your support everyone.