Hospital appointment

[Elizabethtracy]

I first saw the professor at Sheffield when I was first diagnosed in 2021 then the following two years I saw his assistants but this year I haven't been sent a letter for a appointment I feel that because they don't know what caused my Ataxia or which one I have they don't seem bothered My question is do other people with ataxia get yearly appointments

[wobblybee]

I was first diagnosed in 2011..following diagnosis I used to have yearly appointments.

Over the years this changed to every 18 mths.

After each appointment..I received a copy letter, and within weeks a date for my next review,

🤔 You could ring your Neurologists Secretary..and ask her to confirm you were sent this information after your last review.

If it was a case of not having further reviews (for whatever reason) you would have been told at your last appointment.

[Elizabethtracy in reply to wobblybee]

Thank you for your reply

[Sea_]

l feel the same was diagnosed in Jan23 and seen every 6 months but have to chase this with sec in Nov saw one of his team after they found a gene of unknown significance

Got to Prof in London last week got another gene test and will get another MRI to see progress. Glad I fought for London

My advice is to chase his secretary for an appointment

Good luck

[Elizabethtracy in reply to Sea_]

Thank you for your reply

[7151]

Seems always chassing neurologue or secrétaire its become normal and annoying

[Tallguy101]

I was first diagnosed in 2006, I used to get bi annual appointments for the first7-8 years, now I just have 1 . I go to the UCLH in Queens Square London which is generally V.good and worthwhile, I have recently been diagnosed with SCA48.

[Elizabethtracy]

Thank you I will have to chase his secretary last time I was there I asked if been tested for everything but if you first was diagnosed on 2006 and just been told you have SCA48 it makes me think I haven't been tested for everything why did it take so long for you to be told you have SCA48

[littlelegs914]

hi I’ve been going to Sheffield for years ,you see the prof one year then the specialist nurse the year after contact his secretary jan burrows to chase up your next appointment.

[Elizabethtracy]

Thank you