Well…what a whirlwind of a week! And somehow I have found myself here in good hands!
Little background… last September/October I found myself having tingling hands/arms after a couple of ‘shock’ sensations down my spine which I thought was my chair at work. I called the doctor who, over the phone suggested I book a physio. Being really busy I left it on the back burner.
Skip to about 2 weeks ago - my legs felt really numb, still getting the electric shocks when I lower my head, I decided to book that physio appointment. Last weekend my legs were the worst they’ve been - I decided to call the doc on Monday again who referred me for an urgent MRI scan on my spine. I got a call to go in that evening!! WOW!
Went for the MRI - got the results today which states ‘ In the cervical spine there is patchy central cord signal change extending C3-C6, accompanied by focal cord expansion’ OK what the hell have I done? I’ve been referred ‘significant and urgent’ in the letter. Waiting for this appointment- in the meantime I have my physio appt booked for Monday and bloods Wednesday. My MRI happened quicker than I could get booked for these so I’ve been very lucky in that respect.
Don’t know how I found myself here - well I do - Google!
Think I’m just ranting but thanks for reading - no idea what I’m facing if anything?
Would love to hear thoughts x
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Well the doctor called me on the Monday after the MRI saying I’ve got demyelination/inflammation which needs specialist input. Had bloods etc to check for vitamin deficiency but all come back ok.
Got my appointment for neuro come through for 25th April.
Had to go back to the docs for some medication as the feeling of the covers on my knees when in bed was awful. Put me on Amitriptoline? Seems to be doing the trick for now.
Legs are still numb and really getting me down.
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Crumbs, that is a whirlwind isn’t it?
At least you don’t have long to wait until your specialist appointment. I hope you will get more of an idea of about what they think is going on and how they intend to proceed.
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Thanks guys.
Yes I’ve been very lucky in that respect not waiting long for appointments. I’ve heard nothing but good things about the neurology at North Staffs which is where I’ve been referred to. Just need to wait and see what they say. Xx
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Few days til my appointment.
Been off sick last couple days, had a cold but it knocked me for six!!!
How do I tell work what is wrong when I don’t know myself!??? They’re very supportive but I don’t know how they can help me at the moment?? My legs give me problems being numb and sometimes painful and I’m on my feet a lot (I’m a vehicle damage assessor) but I feel I need to move around to keep them moving if that makes sense but it’s just exhausting at the moment. I just need to get to this neurologist and see what’s what.
Urgh…… I dunno
Well had my neuro appointment yesterday. He examined me and asked about symptoms etc. is sending me for repeat MRI on spine and one on head. Going to do a lumbar puncture and start me on IV steroids. He said he’s fairly certain it’s MS.
Don’t know how I feel yet - not really sunk in xx
Hope you are all well xxx
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Lumbar puncture done yesterday and 1st dose of steroids. In every day next week for the rest of the doses -5 days in total. Just taking each day as it comes. Just a slight headache at the minute so just taking it easy. Now the long wait for results xx hope everyone is doing well xx
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Hi Lydia,
How are you? Do you have any news on your results?
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Hi!!
I’m not too bad thank you - did all last week having IV steroids and had my lumbar puncture. Got some feeling back in my legs now so coping much better!
Still waiting for result of the LP and a MrI scan on brain and spine. So no results as yet but neuro said he was fairly certain it is MS. Suppose he just needs to dot the i’s and cross the T’s.
How are you?
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Brain and spine MRI done this morning just got to wait for my follow up now 27th June.
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Thank you for the update. I hope that the steroids are helping your recovery while you wait for your appointment.
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Hi all!
Just thought I’d pop on - had my follow up yesterday following LP and MRIs - and was officially diagnosed with MS.
Not sure it’s sunk in yet and don’t know how I feel.
Waiting for my MS nurse to get in contact to start me on treatment.
Hope you are all doing well 
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Thank you for the update, and welcome to the club that no one’s queuing up to join. It’s not a great feeling, being where you are now, as I well remember. Hang in there and good luck with it all.
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