Last reply 1 year ago
New shivery fing

just a quick question does anyone get the following. when tired I seem to get a weird sensation like a shiver up the spine and down my right side is it ms or I’m I thinking too much into the fact I’m not wearing enough clothes. I do have clothes on right now so you can stop cringing thanks from me ?

Ps ey ups everyone hope your all alreet what been up to this week?

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stumbler
1 year ago

@doubleo7hud , if it occurs when you head is bowed down, chin towards the chest, then this could well be L’hermittes-sign :-

https://www.mstrust.org.uk/a-z/lhermittes-sign


feeblefee
1 year ago

Hey @doubleo7hud
I’ve been thinking about the same thing too how weird. I get it either on the right or left but never over the whole body like a normal shiver, and it’s started to actually be uncomfortable hmmm the mind wonders what this is?


doubleo7hud
1 year ago

cheers @stumbler it’s a shiver not a shock, with goosebumps down the side it hits (just that side too) but the old disco legs are a little like a shock of sorts. Like a tingle in a toe or on me leg and wahoo off goes me leg. I have been tilting my head tho just to make sure and nowt. Thanks tho mate it’s. Nice to know what to expect.

@feeblefee yay symptom twins thought I was going crackers. Just started in the last week not overthinking it tho it be reet is what it is just wanted to know if anyone else gets it. How you doing fee you got more appointments lined up, I’m still in limbo a bit my neuro says she’s certain it is ms but before I go for treatment I need a lumberpuncture just too tick a box.


xeno
1 year ago

@stumbler
Thanks for that, I’ve had it for years and never knew it was called that. Learn something new everyday 🙂


feeblefee
1 year ago

Hello symptom twin @doubleo7hud

I’m doing alright, fatigue is killing me at the mo? well I got my first ms nurse appointment through for the 28th. Does anyone know the procedure from when you’re diagnosed what happens next ? My neuro who diagnosed me has since left the NHS and I thought I’d see a new ms neuro to discuss treatment options before seeing the ms nurse. Will the ms nurse know what type of ms I have as the neuro who diagnosed me didn’t say.


feeblefee
1 year ago

PS @doubleo7hud good luck for the lumbar puncture when it comes . Lie down as much as you can, don’t go yourself get someone to drive you home and drink plenty fizzy juice with caffeine . I did this and didn’t get the headache ?


stumbler
1 year ago

@feeblefee , your initial meeting with your MS Nurse will be a bit of a “getting to know you” session.

They work closely with the Neuros, so should have details of your diagnosis. They are specialist nurses, who only deal with MS patients, so can be more clued up than some Neuros.

They’ll be able to answer any questions you may have following your meetings with the Neuro. And, they’ll be able to discuss the available Disease Modifying Treatments (DMTs) that are available to manage your MS. They can also advise of any other medications to control specific MS symptoms.

It would be wise to find out a bit about DMTs, so that you can have an informed discussion. This site will be of assistance to you, https://support.mstrust.org.uk/file/disease-modifying-treatments-introduction.pdf


doubleo7hud
1 year ago

@feeblefee me too I’m blooming knackered still working tho need to feed baby’s. Thanks for the tip will stock up on rola cola for me visit. I have ms nurse number I think maybe I need to call to arrange a meeting??? Or does it get arranged for me???? No idea I dunno ?‍♀️


stumbler
1 year ago

@doubleo7hud , we need to be masters of our own destiny in managing our MS. A polite call to the MS Nurse won’t harm and will expedite the matter.

And, make sure the Coca Cola is the original stuff, not the low-calorie, sugar-free variants. You need the caffeine. 😉


feeblefee
1 year ago

Thanks @stumbler
I’m gonna give that link a look at just now ?


doubleo7hud
1 year ago

@stumbler as if by fate just as I sent a email to my ms nurse I revived a letter today from my neuro which stated my brain and spine MRI showed T2 hyperintence areas which are likely secondary to demyelination I’m guessing this is the ms part I saw MRI and there was lots of white bits all over’t shop. Is this the worst ones of the lot it’s referring to or is it worse than normal. Anyway back on Topic it also said I was due a meeting with ms nurse and appointment is on way which is nice saves more farting about ?

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