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New to the site...need to vent!

Hi, I’ve looked at this forum for almost a year now and firstly want to thank you all for your openness about MS and for the support and guidance you’ve unknowingly given me. Now for my venting… I’ve struggled massively with my balance since Feb last year and it’s steadily got worse. It’s always there, some days mildly and some days to the extent that I can’t make the five minute walk to school to pick my daughter up. I’ve had to cut my days at work from five to two in a job that I love and am in truth really struggling to manage even that. I’ve had other members of staff drive me home half way through the day because I can’t stand and am very lucky to work with the nicest, most understanding people on the planet! Aside from my lack of balance, my legs go very weak and my head is fuzzy, like I’m going to pass out. Toes and fingers have been buzzy a lot and had ridiculous itching on my shins and back. When my balance gets worse, it’s often accompanied by a burning pain in the top of my head and the noise at work makes me really disorientated. Also had an episode a couple of months ago when I had a sudden stabbing pain just below my chest and then felt like something was squeezing me inside…thought I was having a heart attack because it hurt massively to breathe and my arm went numb right down to my fingertips. It was very scary…but instead of calling an ambulance like my instincts told me, I rang my lovely dad! Who then came round and calmed me down until it eventually went away about 12hours later. Saw a neurologist last year and had an MRI last June and all was fine, and after many tests for many different things I’ve had no answers. Back to the neurologist in two weeks time where my GP says they’ll investigate MS. Very scared of having a lumbar puncture and guess I can at least suggest they do another MRI (last one was just on my brain, so hoping they’ll scan my spine too?). Am just completely in limbo at the moment and need to know what the hell is wrong. Feels like whatever it is has ruled my life for the last 14 months… Venting over! Bec

Hi Bec, and a belated welcome :slight_smile:

It sounds like your GP is being supportive, which is great, but I’m wondering if he/she has suggested you seeing a neurophysio? They can often help a lot with balance and they will also be able to try and narrow down why it’s happening. The waiting list to see neurophysios can be long so, if I were you, I try and get a referral asap - maybe ask your GP since the neuro appointment is two weeks off?

As you’ve probably read on here before, most people find LPs very much easier than they expected. They use thinner needles these days which make the “headache from hell” much less common and most people find they are up and about as normal on the same day. So try not to worry!

I hope the neuro appointment goes well.

Karen x