I really have had enough! These nasty nasty weird sensations that come in waves over my head are herrendous!! The one I had today was in a league of it’s own! It came from nowhere! We had been walking for a while and my balance was very very poor so we decided to stop for lunch… Within a minute or two of sitting down this intense wave came from the back of the right hand side and moved over in a big wave. I am really so so so very scared now!!! I don’t want to be like this anymore! So sorry to moan again and I have no idea if this is related to ms or anything neurological but I needed an outlet for my fears! Can’t stop crying because I’m so scared about it happening again! I’m piss*d off that I didn’t just go to a and e!!! Hate being self pitying!!! Argghhhhhhhhhhh Mandymoo xx

Oh Mandymoo, arghhhhhhh indeed!

You’re not being self pitying at all hun. You obviously find these ‘wave’ thingies very frightening and I don’t blame you!

You didn’t go to A&E tonight but there’s no reason why you can’t go tomorrow hun. Do you have a supportive GP that you could get in to see?

Hope you are feeling a bit better tommorrow love, let us know eh?

Big ((((hugs))),

Mags xx

Hi Mandy, sorry you had such a.bad.d will day, and I wish there was something I could do to help., maybe the best thing is a good sleep and maybe things will look better in.the light of a new day. Give it a try and if you cant sleep (like me) you can always msg me. Frank.

If your like it again today Mandy go to a&e ,you must .You have to find out whats going on .

I hope you msanaged to get some sleep

Sam x

How are you today Mandy?

If you decide against going to A&E then you really should make an appt with your GP - it could be something unrelated to your ongoing tests.

Ask your doc to chase up the appt for your mri too and it may also be a good idea to ring your neuro’s secretary and explain how bad things are - it may speed things up a bit.

I hope today is a better day for you


Debbie xx

Morning Mandymoo xxxx

Hope you are ok xxx let us know how you are xxxxjenxxx

Hi Mandymoo

Poor you. It really is disconcerting having these symptoms specially when it’s your head. As I said I had a wave of pins and needles come over me in my first epsisode and have had patches of pins and needles on my head randomly. The first time was really scary as it was quiet distracting and felt like my head was on vibrate.

As the others have said - go to A&E if it’s feesible for you otherwise see your GP asap. It’s hard but try not to overdo it - can you distract yourself and focus on something else when it happens? It was the only way I could carry on at work - silly but I thought of fairies on a merrygoround (I write in my spare time so hence the overactive imagination!) when it happened and in fact I wanted to laugh in the end. Distraction doesn’t work for everyone and not every time - I’m just concerned worrying about it is going to make it much worse. I really think you need to see someone even if it’s just for your peice of mind.

Good luck Mandy

Let us know how you’re feeling



Sounds horrible Mandy

A&E or pitching a tent at your GPs if necessary - time to demand help!


Karen x

Hi Mandy,

Are you feeling any better now?

You need to go to the GP- I like the idea of camping there until you get what you need.

The sensations you describe I get when I lower my chin towards my chest. It’s called l’hermittes. It’s because when I move my chin down is elongates my spine and causes my lesions to press on different nerves. First few times it happened I swear my heart stopped. It was horrible. Now I know the trigger I don’t look down.

Are you doing anything specific when yours happens? Might help the GP to know the trigger.

Sarah xxx

Hi all, thank you so much for your kind words.

I’m still here, alive and kicking. I have had many more episodes but thankfully no where near as bad as Saturday…thnk God.

I haven’t spoken to the GP or neuro secretary because…well I don’t really know why!

I feel a fraud… a life time of being told you don’t fit neatly into a box for diagnosis and having to push for diagnosis’ and playing the system (ie, psychologists, psychiatrists etc) is exhausting.

I have promised myself that if I have another strong one like that again then A&E it is.

Thank you all again

Mandymoo xx