I have Ataxia

[KiwiBob]

Dr Hadjivassiliou has confirmed that I have Ataxia.

[pinjem]

A diagnosis helps? It did for me. Talking to someone who knew about it was a relief, I hope you feel the same.

[KiwiBob in reply to pinjem]

It has been a 16 year battle with the Scottish NHS. It was a big relief and it was good talking to medical staff who under stood Ataxia. It gives me closer.

[PatsyIpswich]

That's good to know and one less thing to puzzle over. Keep up the exercise and look forward to your posts.

[Leona89]

Morning, so you feel it was worth the journey down to Sheffield then?

[KiwiBob in reply to Leona89]

Yes, 16 years of not knowing what was wrong.

[suzie44na]

I know it is not nice getting a diagnosis, but it is not nice not knowing either and in my case people just thinking it’s all in your head. How long did your results take if you don’t mind me asking. Hope they find cures soon with the new genetic studies they are doing, take care.

Suzie

[KiwiBob in reply to suzie44na]

The head Consultant thinks I have 3 types of Ataxia. Getting brain scan at 09:15. Bloods taken yesterday, but the main Consultant, I can’t spell his name, confirmed I have Ataxia.

It has taken 16 years to get this far.

[suzie44na in reply to KiwiBob]

It’s a long time waiting, I have waited 23 years now, hoping I get results soon from genetic testing, but that is taking a while too. Gosh, I did not know you could get three types, that must be rare I would think. Good luck with your scan.

Suzie

[auntiesally in reply to suzie44na]

I only went twice, had a genetic blood test last July, the got the diagnosis in December that is SCA2, am now under Walton as its a lot nearer, my symptons first started in 2014 which I ignored, until 2016 when my journey started, I am unsure if knowing that I have ataxia makes me worse or is it the progression?

[KiwiBob in reply to auntiesally]

It’s worse not knowing and watching you life go by without you.

[weegiz12345]

Hi, I suppose I'm very lucky in that it took less than a year for me to be dignosed with SCA 2.I feel for you having 3 types of A, it's bad enough having 1. I hope you feel sort of relieved to definately eventually know, at least you've got something to blame. I'm in St Andrews where are you? My mum lives in Sheffield do you think it would help to get referred there? I've found the doctors at Ninewells ,Dundee to be ok so not sure if it would help as you all know Ataxia won't go away so am I best staying where I am?

[KiwiBob in reply to weegiz12345]

I stay in Irvine, Ayrshire. I was having problems up in Scotland getting diagnosed.

Coming down here was the best thing for me.

I feel I can get on with my life now.

[suzie44na in reply to KiwiBob]

It is then best place, I think that too.

Suzie

[wobblybee]

😏 I was misdiagnosed with a different condition in the early 1990s, this hampered getting a correct diagnosis until 2011. If unusual symptoms occur it’s always best not to give up, and continue to question a diagnosis.

[KiwiBob in reply to wobblybee]

I had to put a complaint in to the NHS

[wobblybee in reply to KiwiBob]

😔 I empathise..it’s a very stressful, frustrating experience when you ‘beat a path’ to a GPs door for years on end, only to feel like a time-waster.

[benning]

It's a hard/long journey from now on,GOOD LUCK!!

[KiwiBob in reply to benning]

I have been doing this journey for 16 years.

[ddmagee1]

It’s been a long journey for you! It was about 8 years, of dealing with symptoms, before I was diagnosed, with Cerebellar Ataxia. About the only satisfaction that I feel, is that it was not just all in my head, so to speak, dealing with debilitating symptoms. There is, definitely, something wrong, and now I have a name for it. Sometimes, during those 8 years, I felt I was being labeled a “turkey”, by the general Practitioner! Good luck to you!

[KiwiBob in reply to ddmagee1]

Same thing happened to me with my 2 x neurology Consultant up here in Scotland.

[ddmagee1 in reply to KiwiBob]

I sure can relate to how you were made to feel!! Well, now we know. The big problem, now, is, how can we make living with Ataxia better for us, since, at this point, there doesn’t seem to be a cure?

[KiwiBob in reply to ddmagee1]

I just want to get my medical retirement so I can try and make the best of it. I am only 53 years old.

[PatsyIpswich]

I worked up to retirement and then applied for government benefits but it was too late. You have to apply before you retire and then they continue indefinitely. Work is important but you can always volunteer ... I find time fills itself in with chores and exercising taking longer albeit incrementally.

[KiwiBob in reply to PatsyIpswich]

I have been off work since last December. I would like to return to work but the work place triggers my Ataxia.

I think having 3 different types of Ataxia does not help.

[PatsyIpswich in reply to KiwiBob]

Not good is it.. have to step outside the box and advise yourself eh?

[KiwiBob in reply to PatsyIpswich]

I am know listening to my wife. She says I am not fit for work. I think she is right as I find it hard just getting though the day stuck in the house.

[PatsyIpswich in reply to KiwiBob]

As long as you can motivate yourself, that's the main thing. without the discipline of going to work, you need to be strong minded and get out and about by yourself if possible.

[KiwiBob in reply to PatsyIpswich]

I spend all day doing the house work. Most of that time is spent being seated.

I also try and walk we Lottie. But I get stuck a lot off the time and the local dog walkers and my neighbours bring me home.

Sometimes I am house bound for days.

[Plain in reply to KiwiBob]

Yes I know how you feel being stuck in the house all day. Sometimes it feels such a long day. If I can’t get out for a walk around the block. I use my exercise bike. Listening to audio books helps pass the time.

Take care, and try and find a hobby that makes you smile.

[weegiz12345 in reply to PatsyIpswich]

Hi Patsy Can you please tell me more about the government benefits, I'm looking into reriring and need all the help I can get?

Louise

[KiwiBob in reply to weegiz12345]

I get PIPS. I am on the higher rate for daily living allowance and the basic rate for mobility.

Once your employer has payed all your sick pay to you, you can get ESA basic rate £73.10

I am waiting to be processed for the support rate of ESA which is £38.55. They then add the two together.

Once on the support rate of ESA some people qualify for severe disability premium which is £64.30 per week.

If you get a medical retirement they work it out on a percentage based on your monthly pension.

This my or will very depending on the person.

If you are not working I know people getting all the above. I am still employed for now waiting to go though medical retirement.

[weegiz12345 in reply to KiwiBob]

Thanks

[PatsyIpswich]

This is UK site but if you ask GP for home assessment, they will advise you

gov.uk/browse/disabilities

[weegiz12345 in reply to PatsyIpswich]

Thanks Patsy

[KiwiBob in reply to PatsyIpswich]

Thank you for the link

[february]

Dear KiwiBob, I hope it gives you some peace of mind to finally, after 16 years, know you have ataxia! Hopefully, genetic testing will tell you the type/type's of ataxia you have. I live in the USA and I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause/progressive) when I was 49 (I'm 65 1/2 now), although I had extremely minor symptoms starting at about 43 years of age. Over the years, I had genetic testing for the more well known dominent and recessive ataxia's, always negative. For me it took 20+ years to find out my ataxia was due to Niemann Pick C (NPC) disease (extremely rare, especially late/adult onset). In 2017, I had genetic exome testing, as my neurologist suspected I had ARSACS, which is a rare form of ataxia. It was negative for that, but a single NPC gene was found by chance. Therefore, I had a skin biopsy followed by a blood test which ended up being positive for NPC. Ultimately, it was determined I not only had a single NPC gene, but an unknown variant as well. Anyway, finding out my ataxia was due to NPC disease answered a lot of questions and gave me peace of mind. Sometimes the road is longer than we'd like it to be! Therefore, I wish the same for you! My best to you..., ;o)