Referred by GP but still waiting

My wife (68) was diagnosed with Cerebella Ataxia on 26th September 2016 and referred to a neurologist …… we still await an appointment. Like many writing on these pages I am left to find out what I can through Ataxia UK website. We desperately need to know what type of SCA she has. We live in Scotland well away from the four clinics in England – London, Oxford, Sheffield & Newcastle. There is a “centre” in Edinburgh but no information about it. If my wife has to go there she will need to be referred by the local neurologist ….… when we see him. The last time she was referred it was in January 2015 and we got an appointment on June 30th. Then they ruled out Dementia, MS, Alzheimer’s, Parkinson’s and a stroke. Our GP says they missed the Ataxia!!

An Ataxia Volunteer (found through Ataxia UK – Supporting You – A List of Branches and Support groups) is visiting us in the New Year so we hope we will find out a lot more then.

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  • The NHS is struggling, I'm waiting to see a neurologist and should be seeing him on the 3rd January, referral done in May 2016. I'm afraid there will be long waits but hang on in there and make use of the services and support that you can get.

  • Many thanks, consoling in some ways there are others like us, but worrying all the same over the time referrals take. Patience is a virtue they say however I am not the one with the ataxia.

  • I've been referred since Dec 2011, possibly earlier I've lost track. Can't remember how many consultants I've seen, and oh so frustrating when you've waited months only to be told they don't have the answer to what is going on, and you get bounced back to the GP...

  • it took 5 months for me to be diagnosed having been bounced back and forth to consultants but apart from ataxia I have normal pressure hydrocephaluswhich everyone missed and this was diagnosed by having a lumbar puncture and a spinal tap when they take some fluid from the spine and my walking improved dramatically so I had a shunt put in my brain this month and so far I am fine but cannot drive for 6 months post op. so you can see everything takes a long time. Before I was finally diagnosed I did everything to improve my symptoms - exercise classes, help with speech and swallowing from a Speech and Language therapist so if youkeep as active as you can that doe s help. we have a local ataxia group that meets monthly which is helpful and the brain and spine charity was also really helpful. My GP did not know anything so Ataxia UK sent the practice a lot of info for GPs. all the best Sylviax

  • Very many thanks Sylvia. So pleased you eventually got everything sorted and you have a local support group. Keeping active is difficult for my wife with a knee replacement that has been unsuccessful (still very painful) and the other knee over due being done, but now unlikely to be. Still positive she is looking forward tto the Ataxia volunteer's visit in the new year when we hope to find out a lot more about local support, if any. Fortunately our GP recognised ataxia but the neurologist missed it in 2015. Kind regards, David

  • Under NHS you have to be seen within 18 weeks of referral

  • In England yes Jaffa12, but we are in Scotland. The last time my wife was referred it was 20 weeks+. I do hope you are right for us this time. Regards, David

  • Hi David😊If the referral is to Newcastle, I may see you, I volunteer there😊xBeryl

  • Hi Beryl, would be great to meet you if it happens. The initial referral will be local to Ayr Hospital (South Ayrshire) as last time (June 2015) when all the ageing conditions were ruled out, but Ataxia missed. Newcastle would be good as I have daughter in Redcar, but unfortunately her house is not suitable for my wife as stairs are now extremely difficult. We struggle night and morning, fortunately having a toilet downstairs during the day. Knee replacement op has not worked - still painful - consultant has no solution. The other knee needs doing! She is one of the 15% failure rate. Going to put in a stair lift. Also awaiting an assessment by Occupational Health Service. Becoming more unsteady on her feet, coughing more, can no longer write, speech deteriorating but full aware of all that is happening, as you will understand. David

  • David, regarding the coughing, your wife might benefit from being referred to a Speech Therapist. This isn't as silly as it sounds🙂 Sometimes belated coughing is brought on by inadvertently swallowing food/liquid or even saliva😳 There is advice available on how to help cope with this, such as keeping the chin down when swallowing, straws with valves, and thickeners for liquids. I'm told the last one works best with cold drinks, thick gloopy tea is an acquired taste😉

    I'm so sorry the knee replacement didn't go to plan😑 This must make her wary about another one.

    We have a house, fortunately the stairs are still accessible because there's a break to a half landing, and we have a downstairs toilet👍 If we could move now, I'd consider a bungalow🙂

    If she doesn't have a rollator, do consider one. But it has to be said, not everyone with ataxia finds them helpful. So, maybe get one on loan from Social Services just to try it out... Four wheeled versions have a seat 👍 For anyone else reading this🙂 be aware that a wide gait can effect your choice of rollator.

    My husband has tinnitus, and our conversations often lead to confusion because my speech can sometimes 'tail off' or, what I actually say isn't what I meant to say 😳 Occasionally, I'm aware that my symptoms are becoming more progressive, ataxia can be so unpredictable 🤔xB

  • Thanks Beryl for all your information. Will discuss it with my wife, sorry to be so long in replying but have had little time of late. I am having to go out so will be in touch soon. David

  • Hi Beryl, a lot of the coughing is due to saliva. Advice is best coming from a speech therapist as you say. This heightens the need to see a neurologist for further referrals. I find it difficult when it comes to discussions in that I could be loading my wife with more knowledge than she can cope, before she really needs it, such as thickening products. I will keep this to the side for the present.

    The Rollator (not very practical with two steps from her garden room to the rest of the ground floor and toilet) and a wheel chair (opens up more opportunities with being less able to walk so far) have been suggested by the Carer's Centre here in Ayr but she declined, not easy to admit to needing one, perhaps the reason.

    Speech is becoming more of a problem so I wonder if her hearing is not as acute, as I appear to be misheard more these days.

    Moving house is a greater thought, the older you get. Easier I think to adapt what we have. Thanks again for your thoughts and suggestions. David

  • Hello I to have cerebellum ataxia it was found in 1997 it damages your co ordination balance hope you had a nice Christmas and a happy New Year to you where about in Scotland do live. I was married to a Scottish girl my dad came Scotland. their is a Ataxia support group in Edinburg if you want to join it I got details if you want them well bye for now look forward to hearing from you soon

  • Hi 24-06-1956, we live in Ayr, any info on Edinburgh is welcome. We are getting a visit from an Ayrshire volunteer sometime this month so hope to learn of more local support. Many thanks for your offer of assistance.

  • AT LAST, an appointment this Saturday with the Neurologist so we will see what comes next.

  • Saw Neurologist yesterday. He does not think my wife has Ataxia, despite being unable to write any more, speech difficulties (one would think she is drunk), coughing (while eating can be messy) poor coordination (needs two hands to lift things), unsteadiness walking and falls.

    We saw past MRI scan which showed slight narrowing of some blood vessels in the centre of her brain. There was no indication of anything amiss with the cerebellum. He has ordered another scan in view of her deterioration from 2 years ago for a comparison. Hopefully we will get more definitive information next time - we wait on........

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