Newly comer to the club

Hi there
I am 53 years old , 4 grown up kids, one springer spaniel dog and I am a full time NHS mental health Nurse.
I am newly diagnosed only since June
I have had MRI scans of brain and spine and neck
I think the good news is my neurologist expected to see more lesions on my brain than what is there
I think this is due to symptoms I am experiencing
I don’t know which type but my symptoms are there everyday and I experience what I now call “hits” on a daily basis
These are episodes where sensations run up one leg first , when half way up it then starts in other leg and then one hand and all toes are curling and I’m panting through the pain.
I now know once the hit reaches the second leg and the curling starts that it’s not long now and it will cease.
My feet can be either dead frozen or red hot and need massaging to bring life to them
I have the heat sensations running around different parts of my body at different times
Balance is off at times
Walking takes my breath away and exertion brings the ‘hits’
I also get the hug daily whether I want a hug or not - pain is left after the hits and is sometimes foot or coccyx which channels upwards

So I was given high dose steroids for 5 days , started on gabapentine and told would need LB ( not had yet)

And that’s where I am at , GP says would get me some good quality info so not using google and see if an MS nurse local to me - not heard a thing

It’s frustrating when someone says they will call back and don’t ,

This all started on 1/5 these symptoms and have gotten worse as time goes on
So the hits can happen anytime day or night and last week had 7 hits through night time - painful - exhausting

Looking back to a year ago
I was having episodes of balance issues , I put it down to menopause
I’ve never fallen but swayed off to side

Later last year I started to sleep really well on a night after years of not doing so and when I woke first thing I would say I’d I’m tired

I tried looking at the different stages of MS and tried to identify which one mine is but I haven’t been able to
I’ll leave that to the experts
It’s not my area of expertise

I’m off work at moment after working through may and June but in June worked from home
Last week after the 7 hits GP says no need to rest and get used to this and get the other assessments done which is the LP

Everything seems so slow
I see it says get treatment as Spain as possible after diagnosis but then nothing seems to happen

The steroids I took - I seemed to get worse so I was hoping that was the storm before the calm but not so

I’m not sure if the gabapentin is to do anything but manage pain
I’m now on 200mg x 3 daily but still have pain

No one seems to be monitoring it
GP says can increase it up
And left me to it

I work with this medication in my job but I wanted someone else to say yes increase again
As now I’m the patient and not the professional

As we all know calling the GP surgery is a process in itself and I feel I am taking a slot that someone else more needier should have just to get the go ahead

I’ve never been a good patient and thankfully it’s been years since I was one

I see people say different level of care depending on your area
Well as we know the inequalities of living up north ( West Yorkshire)
Leaves me wondering what is going to be available to me and is it a postcode lottery

Well being call yesterday and although agreed for now not stable so work is off the agenda ( I can’t even think how I would go on if I had a hit in a patients home ) but we know it’s there focus to get you back to work

Also no one wants to be on sick pay _ I’m on probation as it’s a new job so it’s all in my mind that I could go as in probationary period

So any advice - on any of it would be gratefully received

I had a three week holiday booked abroad and it’s looming

  • I don’t even have the energy to think about it - I’ve worked all through covid
    On hot wards - not had covid touch wood but seen the devastating affects up close and personal
    At this time
    I worked with people living with dementia
    Now I have joined a community team for urgent care response , I am the only MH nurse on the team

I have let DVLA know but not driving currently anyway

I’ve let my insurance company know
I’ve talked to my holiday insurance re the diagnosis but as I say I don’t know if that long awaited holiday will be scrapped as I can’t think of being on a plane and airport walks and all that

Does anyone have any info on anyone else I should let know or have I covered it all

Thanks - sorry if this is a long one

:heart: & peace

The information on the main part of this MS Society site is a great place to start - it is all reliable and proper and evidence-based. So if you do want to read up on things before you get the info you are waiting for, it’s a good resource. It helped me no end when I was newly dx many years ago, and has often helped me since.

I am sorry that you are having such a worrying time.

I am sorr

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