I’m very pleased now. I thought my neuro had said goodbye for the last time but I got a letter yesterday with my next appointment. He may possibly not know very much about ataxia but I’m pleased to have somebody rather than nobody. There is an ataxia specialist about 35 miles away but it seems a bit too distant when I’m without transport.
I don’t have a local Neurologist anymore, she moved to do research. My next review appointment is with a Neurologist almost 300miles away It means an a long journey, and an overnight stay, fortunately I’ll have my husband with me, but I’m in 2minds about going… Common sense tells me I should, but I honestly don’t expect anything from the appointment.
"…but I honestly don’t expect anything from the appointment.’ And I think that’s the issue for many people with neuro symptoms. Although my situation is not directly linked with ataxia, some of my symptoms are similar and things are ‘stable’, that’s not to say things are good, just stable. So I go through all of the hassle of getting into city just to be told ‘Same, same. Go home, see you next time’.
But you can bet the appointment I don’t go to will be the one I probably should keep. They may have another treatment option or a specific symptom management tool I could try or they notice something different that I haven’t recognised in my symptoms. Often it’s one of those ‘damned if you do, damned if you don’t’ situations. So, I figure I might as well do it (My wife would give me hell if I didn’t attend the appointments anyway ‘Happy wife, happy life’, Well that’s what I hear )
Merl from the Moderator Support Team
Thinking positively, I ‘whinge and moan’ but my husband’ll drag me there kicking anyway But…I have reservations. Last time, I was actually given a referral and I felt quite optimistic
Disappointingly, the referral (another 600 mile round trip) was to a different Neurologist who prescribed trial medication (warning me about side effects), said he would keep contact by email because of the distance, but then seemingly vanished without trace I had questions about the medication but I’ve been unable to get in touch either by phone, or email. There’s just an answering machine that nobody replies to
And, I’ve been trying to contact the Neurologist I actually have a review with, again I only get an answering machine, no-one calls back.
It is hard to stay positive in these circumstances. But…if I want to complain, I’m going to have to keep the appointment.
300 miles? Where’s that? Sheffield is only about 100 from where you live - or has Ataxia Unit closed?
I have an appointment with another neurologist (that makes lucky 13!) on October 14 at NYU and like Beryl says, I too “don’t expect anything from the appointment”. I am going to show her the first time (2005) MRI of my brain and the last time (2017) done and tell me if she sees any shrinking of the cerebellum. Not to mention I was tested positive for SCA 2 twice, now they tell me that I have NPC1! Does anybody else have some good questions I should ask?
I live near Newcastle upon Tyne. Unfortunately the Newcastle Ataxia Centre closed, but prior to that my Neurologist had sent a blood test to the London Ataxia Centre (Queen Square). Following on from that they gave me an appointment, so that’s where I have my review. Hence, 600 mile round trip, and an overnight stay Sheffield would still be nearly 300 round trip, but in any case it wasn’t an option.
At the moment, we don’t have a Neurologist specialising in ataxia, in Newcastle. Some ataxia patients are being seen by Neurologists at the Royal Victoria Infirmary, but some (SCA6 & Idiopathic) have had letters confirming they will have no further reviews with a Neurologist, and to just liaise with their GP to manage symptoms.