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Feeling confused

Hi everyone,

My 14 year old granddaughter was given a ‘we think it’s MS but will do further tests to confirm’ diagnosis last Friday. She spent two nights in hospital then was sent home with the advice to ’ carry on as normal’… obviously the family are in shock - my granddaughter is very calm about the whole thing! So, I have some questions please - the left side of her face was affected, any ideas how long this might take to return to normal? How can we help her to keep fit and healthy? Any particular dietary information that would help? Any supplements recommended to help with healing and/or help support her body to keep as healthy as possible? We understand fatigue is something she’ll need to learn to manage, any particular exercise advice?

I’m sure we’ll have more questions but any help and advice would really be appreciated, thanks.

Hello

How scary for you all as a family. It’s bad enough being diagnosed as an adult, but at 14 it’s heartbreaking.

Obviously, it still might not be MS, if there are further tests (maybe lumbar puncture, visual evoked perceptions, others?).

I can’t be of much help. Assuming it is MS, the left side of her face may take some time to recover. The typical pattern for most people with MS is that of relapses and remission. Remission (the getting better bit), can take days if the relapse is treated with high dose steroids, weeks, or in fact months. And steroids don’t always help, so can’t be relied upon to to the speeding up of remission for which they are prescribed. In fact, often with relapses the remission is very slow and sneaky. The other nerves do a bit of compensation and the relapse gradually subsides. One day you wake up and suddenly realise that the numb hand/foot/face feels better.

With regard to health, encourage your granddaughter to get and stay as fit as she can. It will pay dividends in the long term. Physiotherapy can help if needed. Fatigue management is important. Have a look at https://www.mstrust.org.uk/a-z/fatigue

Many neurologists recommend that people with MS take a high dose of Vitamin D, but that needs to be done in conjunction with blood tests to check the levels, pre and post starting. Also Vitamin B12.

Personally, I’m not a fan of specific diets for MS, although many people are, and there are numerous diets around, which people swear by. I believe in just eating healthily.

Best of luck.

Sue

We had similar with our son, they are saying it’s a brainstem demyelination but we’re not so sure. His face drooped and was paralysed for quite a few months! Hope your grand-daughter recovers soon :relaxed: