Is it common for Consultant Neurologist to just ... - Ataxia UK

Ataxia UK

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Is it common for Consultant Neurologist to just diagnose Ataxia without offering treatment or further diagnosis? I am unsure what to do now.

Eysteinsson profile image
18 Replies

Ataxia

18 Replies
Telegraphist profile image
Telegraphist

There are many different types of Ataxia. You should expect further tests to identify which one you have. There may well be no treatment offered, but your health and fitness expectations and choice of aids are affected. Ask for a more specific diagnosis.

wobblybee profile image
wobblybee

Generally, appropriate testing would be done relevant to any symptoms you’re experiencing. But..it’s possible this hasn’t happened due to your earlier diagnosis of CP. The Neurologist may have decided that your symptoms were related to that, but you should have been told if that was the case.

It probably won’t be easy to question the diagnosis of a Consultant Neurologist, but if you need peace of mind you could seek a 2nd opinion. Or, ask your GP to refer you to a UK Ataxia Centre.

For those of us with a definite diagnosis of ataxia..there are therapies and medications that are known to alleviate specific symptoms..but no cure. At best..if the diagnosis is Acquired Ataxia due to a vitamin deficiency, IV supplements can make a big difference.

Stanleyclan profile image
Stanleyclan

In our experience.....yes! I pushed and pushed for more tests but in the end we stopped going....found the advice given just depressing and premature...sippy cups for a 36 year old with the slightest of symptoms.....that thankfully are still mild. ..

ddmagee1 profile image
ddmagee1

it takes awhile, sometimes, for neurologists to find out exactly, what type of Ataxia one has, and the causes. For me, the journey took several years, with many tests! So, treatment or further diagnosis, was not completed for several years, for me! Try to be patient! It can be an extremely difficult task, for Doctor’s evaluating ataxia! I had 2 neurologists, and 2 neurosurgeons, working on my case, of Ataxia, but eventually the causal factor, was found, and treatment was commenced!

BlanketTime1 profile image
BlanketTime1

my neuro did this, just oh you have ataxia. bye. actually my first neuro told me it was in my head🤬. i fired him. the most recent neuro sent me for genetic testing. it's about 10,000 but they have a scheme for low income, so i'll only pay 100! i'm very excited about that. i'd like to know exactly what it is, especially since it wasn't the first neurological thing to go wrong with me. i hope you get answers soon.🤗

Ostap profile image
Ostap

unfortunately this is my experience too. Try to keep fit, and invest in a balance board was the advice. That was 4 years ago having been initially diagnosed with Peripheral Neuropathy. A private consultation this Summer diagnosed Cerebellar Ataxia. I am so much worse after 4 years. I rarely leave the house, and just try not to fall. I now also have tremors and rock. I have had MRI scans, but no gene testing, no gluten intolerance testing and no obvious consideration of any other cause of my condition eg Wilson’s Disease. All very disappointing. But perhaps this is just my new reality. I see my NHS Consultant again tomorrow. My expectations aren’t high.

Eysteinsson profile image
Eysteinsson

I have been seeing Neurologists off and on for 18 years now. Some better than others. Some seemed uninterested in looking into my problems.

The neurologist that i saw on monday seemed good, although i had to encourage him to give the diagnosis. He couldnt see the point in 'putting a label on it' but i need to know why some days im ok, somedays i can manage with pain meds and some days i dont leave the flat because my coordination and balance are too bad.

But i will try and have a chat with my GP next week. Overall my problems are generally mild most days.

KiwiBob profile image
KiwiBob

Hi, I am based in Scotland. I had to be sent down to Sheffield Ataxia Center to be diagnosed.

Eysteinsson profile image
Eysteinsson in reply to KiwiBob

Did NHS Scotland cover the travel and accommodation costs?

KiwiBob profile image
KiwiBob in reply to Eysteinsson

yes

february profile image
february

I was diagnosed with sporadic cerebellar ataxia (unknown cause) 20 years ago. No treatment. In 2017 I had genetic exome testing and found out that my ataxia was due to Niemann Pick C disease (NPC). It’s extremely rare and no cure, but at least I know!

Tiggywinkles profile image
Tiggywinkles

My initial diagnosis was cerebellar ataxia, that was it after been tested for all the obvious types. (13 vials of blood) Then about 3 years on the consultant said 'shall we test you for Friedreich's Ataxia?) He hadn't bothered before because I was in my 40s and lo and behold it was positive! So, push for a definite diagnosis.

7151 profile image
7151

in my case yes !

penelope2 profile image
penelope2

Definitely push your gp or neurologist for referral to either UCLH or Sheffield ataxia clinic. Both good, London deals with genetic types and Sheffield with autoimmune types of ataxia. I went to one and asked to be referred to the other, no problems.

My experiences are that mostlocal neurologists are out of their depth with ataxia and gps even worse.

There are many types of ataxia and some are idiopathic (unknown). There is no cure at the moment for any. That said we are all different and have different symptoms. It is generally considered though that exercise, good nutrition and looking after yourself will keep CA sufferers as good as they can be for as long as possible.

Have found out myself by researching, reading papers and Ataxia UK is a good start and their helpline will listen and point you in the right direction. It is a personal bugbear of mine that that that generally speaking, until you get to the experts as above, the NHS knows very little, does not keep up with recent research and it all takes so LONG!!!!

Cerebellar ataxia as it progresses in sufferers must cost the NHS so much that it beggars belief that it takes so long to diagnose. The personal cost to us sufferers cannot be counted! I find it all very scary and that is 8 years, probably more, since the onset of symptoms

Good luck 🤞

Edwardparsons profile image
Edwardparsons

I have been diagnosed with Ataxia by Addenbrookes and told that nothing else can be done so I would not be contacted again.

timk profile image
timkVolunteer

Sadly, some neurologists who do not know about ataxia, think they can't help their patients any further, and say 'goodbye'. Try and see a neurologist from this list who has a special interest in ataxia - it's on the Ataxia UK website. Although they can't cure you (nobody can!), they can help often help with further diagnosis and help with symptom treatment.

ataxia.org.uk/wp-content/up...

Eysteinsson profile image
Eysteinsson in reply to timk

Many thanks for this list. I note that there is a Neurologist with an interest in Ataxia in the same hospital as the Neurologist I saw last week. I need to try and have a chat with my GP.

timk profile image
timkVolunteer in reply to Eysteinsson

Or contact the neurologist you saw for a further chat and/or a referral. There may be a good reason why you were not passed on.

If you need any help getting a referral, contact the Helpline: ataxia.org.uk/support-servi...