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“I didn’t receive any information about MS when I was diagnosed. Nothing.” – Leonie’s story

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Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed.

The impact of this information gap can be profound. Many people who took part in our survey told us that they felt they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.

Today we hear from Leonie who tells us about the struggle she had to find information that could help her make sense of MS. In the end it took her almost two years to find an MS specialist nurse who could help her. In the meantime her health suffered, which meant problems at home and at work.

In this video she explains her struggle to find up-to-date, relevant information.

How did you find MS information when you were diagnosed? What did you find helpful and what did you find not so helpful? Let us know in the comments below or on social media, using the hashtag #mssense.

Over the coming days we’ll be sharing the experiences of more people living with MS and introducing a new information resource which we believe will help people find the right information  at the right time for them.

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