NEAD and blindness

Posted , 2 users are following.

Hi all,

My mum has been in hospital for the past 8 weeks having seizures and we have just been told there are no more tests they can do and she has to go home. I believe it's NEAD but she hasn't had a diagnosis. One question I have is that since she had the first big one that lasted 3 days she hasn't been able to see since but acts like she can see some of the time. She says it's all black but the hospital says that they eyes are fine.

Has anyone any experience with this?

Many thanks

Nina x

0 likes, 4 replies

4 Replies

  • Posted

    My son has nead

    When his symptoms where high in the beginning and before he had a diagnosis he was admitted to hospital on one occasion as he lost his voice and when it did return he had a stutter and spoke like he was deaf

    It took about four weeks before his voice returned back to normal

    Has your mum been referred to a neurologist?

    My son is under a great neurologist who diagnosed him with nead

    He also sees a psychologist who has been brilliant and a great support to him and a great help in his recovery

    • Posted

      Thank you Sarah. You give me confidence. She seeing her neurologist today. I'm going to speak to the hospital about a phycologist, I just worry that she will have to wait months for an appointment.

    • Posted

      It took us two years of a&e visits, hospital stays, hospital appointments, tests and no end of blood tests to get the right diagnosis and a year after from then for my son to get back to a relatively normal life but it has taken some emotional and physical efforts on my sons behalf to get there

      This time last year he was in a wheelchair, collapsing at least four times a day and needed someone with him at all times

      He is now out of the wheelchair, no longer needs someone with him (goes out on his own again now) and has not collapsed at all in five months

      We did pay for a psychologist privately as the waiting list on the

      NHS is hurrendous (we would still

      be waiting now)

    • Posted

      Sorry I got over excited there

      He has been symptom free for three months not five months

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