What next when your consultant hasn't really got a clue what's going on?

My wife's ataxia is caused by inflammation of the spinal cord. This affects her balance and the control of her feet and hands. Walking in the dark is virtually impossible! She has been told she has sensory ataxia of which there is no cure and no one can say what the future will be. She is getting progressively worse and gets very tired as well as frustrated, however she just gets on with it! Her condition gets a lot worse when she gets ill, such as having a cold. Recently she had bells palsy, which the consultant says is probably not linked. The consultants do not appear to be able to give us any useful information. Is this an normal experience for someone with her condition?

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  • Hi mikebo

    I am really sorry to hear about the situation you are in. Unfortunately I do not think your experience is uncommon.

    Is there a name for your wife's underlying condition i.e. what is causing the inflammation of the spinal cord? Has your wife ever been offered therapies such as physiotherapy, occupational therapy?

    Harriet

  • Hi Harriet,

    Despite various blood tests, lumber puncture etc they can not find a definite cause so suspect a viral infection. Although she has had the condition for nearly 7 years it was only a MRI 12 months ago the consultants now believe something is going on!

    She was then given several sessions of physio which made her more aware of her posture. Apart from that we've started to do our own research on the internet but our slightly confused by the various types. She take vitamin D and an iron supplement which she says helps her energy levels, but all we get from the consultants is more tests and 'there is nothing more can do.' This may well be the case but its very frustrating to say the least.

    Mike

  • Hi Mike

    It sounds like it might be helpful for your wife to go one of the Accredited Ataxia Centres in either London, Oxford, Sheffield or Newcastle, whichever is most convenient to you. You could ask either your GP or neurologist to refer you. Your wife would see a doctor and other healthcare professionals who are experts in ataxia and would be able to give you further advice on diagnosis and optimal management. I am sure, if you do go, it would be helpful if you take any MRI films that your wife has had with you.

    My advice would be not to look too hard at all the information on the internet. I know this is easier said than done but there is so much of it, it can be overwhelming and really quite scary.

    Harriet

  • Thanks Harriet we will do that. Next consultant meeting New Years Eve!

  • Oh goodness, what a date!

    I hope everything goes well for you both. If I can be of any help in the meantime, please do not hesitate to let me know.

    Harriet

  • I was told by one Neurologist it was stress.Then I had to pay for a second opinion.He arranged for an MRI which showed disproportionate degereration of the cerebellum.

    Then they took me seriously.I went back on the NHS and it was a different story now.

    That was 5 years ago.

  • Hi Mike! First of all, I hope the next meeting with the Neurologist is more positive.

    I have been aware something was not right with me for quite a long time, but

    like your wife, just got on with it, until it couldn't be ingnored any longer. In

    my experience GPs are not clued up on Ataxia, the symptoms can mimic so

    many other neurological conditions, even basic stress and depression. I was

    eventually diagnosed when as a last resort, a GP referred me to a Falls & Syncopy Dept.

    After tests there revealed certain abnormalities, I saw a Neurologist and had

    an MRI. Like your wife I also have difficulties being out when it's dark, and also

    if indoor lighting is poor. It's understandable that your wife gets very tired, the

    condition requires a lot of concentration on behalf of the patient, you seem to

    lose instinct to do things automatically. My CA hasn't been defined, I was tested

    specifically for SCA6, since my mother had had a history of similar symptoms,

    however it was negative. As we all know searching the internet has pros and

    cons. It can put the fear of god into you, or alleviate a fear, But, knowledge is

    power, and I have found this particular site to be a great comfort. Best wishes

    to you both.

  • Hello "mike",

    you forgot to tag your question.

    Is it ok by you if our Admins, Harry, tagged it ?

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    Tags are like helpful labels that allow you to find useful posts quickly. They appear at the bottom of questions and posts. When you write a post you should add relevant tags to your own posts and questions by typing them in the tag box. By clicking on a tag you will be able to find all the questions and posts that have the same tag, making browsing much easier.

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    Regards

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