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.

[penelope2]

Sounds like a long journey which is common for us with ataxia to get a diagnosis. Has anyone suggested a gluten free diet. No medication involved just will power and the motivation will kick in if you feel improvements or stabilising of symptoms. It might take some time, 6 months or more but if you do it strictly then you might feel your body changing in a positive way quite quickly. If this happens get a referral to the Sheffield hospital and Professor Hadjivassiliou's team as quickly as possible. Ataxia UK' helpline can help with referrals. Good luck.

[2hot in reply to penelope2]

Thanks for your reply Penelope2. I have been on a wheat free diet for about10 years. I seem to be ok with gluten but certain wheats cause mega problems. As it is impossible to know which wheat is used unless you cook your own food I am very careful with what I eat. I will wait until all of the test results come back but I have a feeling it is a mix of conditions which is why a diagnosis is so elusive. As I said I was impressed with Dr Tonioli as she actually seemed to want to get to the bottom of things.