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Clinically isolated syndrome

Hi. My names Becky and I was diagnosed on Thursday with clincally isolated syndrome. For 3 weeks ive had terrible dizzy spells, off balance and a blinding headache. I suffer with migraines and have done for about 5 years now. I originally seen 3 GPs who all told me to leave it as its an ear infection and will sort itself out. I finally visited A and E after falling over who gave me a CT scan and originally thought I’d had a stroke and kept me in hospital. I had an MRI the next day and the day after was told I have 2 major lesions and other lesions that are not affecting me at the moment. The 2 lesions are affecting my left leg and eye sight which is causing the off balance and dizziness. I was then placed on a steroid drip for 3 days and finally allowed to go home. I have a lumbar puncture appointment in the next couple of weeks which im so scared about having, and an appointment with the MS nurse. Everyone (except the original GPs) have been fantastic and helped me massively. I just wondered if anyone can help me by saying how long this ‘attack’ might last for? It’s been 3 weeks of constant dizziness, headaches and walking into walls/doors. When I wake in the morning it’s like there’s a brick on my head and the room is moving around terribly. As the day progresses it becomes easier and I feel more positive. Ive been signed off of work for 2 weeks but itching to go back. I’m terrified that this won’t ever go, I’m 21 and just want to wake up feeling okay again. The uncertainty of not knowing is starting to get to me. Any advice on how to help the situation would be brilliant :slight_smile:

thanks!

Becky

Can anyone help? :frowning:

Hi Becky

Sorry to hear you’re having a rough time. Unfortunately, none of us are able to give you an idea of how long this ‘attack’ might last. I appreciate that’s not the answer you were hoping for, but the CNS (central nervous system) takes its own sweet time. On the positive side, the hospital treated you promptly with steroids and have got you on track toward finding out what’s going on. What’s scaring you about the lumbar puncture?

In the meantime, try to avoid ‘googling’ your symptoms, you’ll have yourself convinced you have 101 different problems before tea-time.

You could try meditation. If you’ve never tried meditation before, put on some quiet/soothing music, get yourself as comfortable as possible (you don’t need to be crossed legged on the floor - sitting in a comfortable chair or lying on your bed is fine) and concentrate first of all on the music itself, try to pick out a particular part of the music, a specific instrument say, and follow just the notes being used by that instrument. This method of meditation is easier than the ‘clear your mind of all thoughts’ type of meditation for people trying meditation for the first time.

Theresa

Hi Theresa

thank you so much for getting back to me. I’m worried the LP is going to hurt. I suffer with terrible headaches and heard it can give chronic headaches afterwards. I can be a bit of a wimp when it comes to pain. I will try to stop googling but have got my MS nurse appointment next week as they’d like to talk to me and answer any questions I have. Everyone that has dealt with me have been fantastic. Thank you for your tip on mediation I’ll give that a go and try ride this out hopefully it’s on the way up now the steroids are in place.

Thank you again x