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@Joannie76 

Last reply

Joannie76

Newly diagnosed

Hi, I was diagnosed with MS last Tuesday 11th July. I have been referred to a MS specialist as the Neurologist I was having tests under isn't a specialist so she couldn't tell me anything further. I don't know what type I have or what treatments are available. I feel in limbo again and have so many questions. I am the 4th female in my family to be diagnosed including my Mother who was diagnosed 40 odd years ago. Fingers crossed I hear from the specialist soon. Any advice anyone has dealing with this interm period is very much appreciated. x
Glasgow, United Kingdom
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@mellowmedusa
@mellowmedusa
 

It’s an incredibly difficult time being in limbo. That was me last July (saw specialist end of November). My advice? 1. Research but don’t go overboard. The MS Decision Aids tool is a good one to learn about the DMTs that are available. Things are very different from when your mum was diagnosed. 2. Remember most people on the internet with MS (including this site often) are there because they’re experiencing problems or searching for answers. You’re not them and you likely won’t have the same issues they do. There’s a whole group out there that are just getting on and living their life. 3. Have some counselling. Diagnosis with a chronic disease is life altering. Your local MS society May be able to provide you some sessions free. Start keeping a journal and start with 5m of mindfulness every day. This will help you manage stress. 4. Self-manage your own MS, before and after you get a DMT. Start eating healthier, exercise as part of your lifestyle - yoga, aerobic, strength - do pelvic floor exercises (always a good idea), stay in work if you can, take up a challenging hobby and enjoy your family and friends. Dogs are good too. Lifestyle is as least as important as a DMT. 5. Careful who you tell. You may want to tell everybody - that’s fine. I don’t regret exactly telling all my friends as it’s something I had to do at the time because I needed to verbalise it. But now… I wish I’d kept it to family. You can’t control who knows once it’s out there.

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@DVGFleming
@DVGFleming
 

Look up MS Revive, in Govan, excellent charity that will cater for all your needs from physio to help filling in pip forms.

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