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"Just deal with it"

My partner dragged me into a&e yesterday because the numbness in my legs is getting worse (struggling to wiggle my toes) and I’ve been having back pain. GP told us to go up to a&e if it got worse because there’s nothing they can do for me. After waiting 2 hours in an empty waiting room the doctor went back over everything I’ve been explaining all week and begrudgingly went to check if my MRI results were back. They were - spine is clear but there are 3 new lesions on my brain, all stable and not causing problems she says. I asked 3 times if my lesions aren’t causing it why can’t I feel my legs, she just kept changing the subject said a neurologist would be in touch in the meantime “just deal with it”

That upset me more than anything else “just deal with it” obviously I am trying to deal with it but I can’t walk around the house without a walking stick, I can’t wiggle my toes properly, on Monday they said that if there were new lesions they would start me on the steroids, yesterday she said they don’t need to start me on steroids.

Sorry for rambling I’m just getting so frustrated with the whole situation, thank you for allowing me to ramble.

Hi, I know exactly how you are feeling. I have not been able to move my toes on my right foot for over six months now and have many other symptoms. This can be a very long journey for some of us unless you are very lucky to get an early diagnosis.

Best wishes,

Marjie xx

hiya tp

i am well aware how frustrating it is but diagnosis brings even more questions.

we all expect different things from our medical team-whoever that may entail.

just get on with it is probably the best advice, heartless tho it may first appear its actually spot on (from an oldie who does just that) i remember what it is like where you are-i do-but try to deal with facts and not what ifs cos they really use up your precious energy.

take care and enjoy life now-worry solves nowt.

ellie

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In my experience, the mood in A&E is typically something like, ‘If you haven’t been scraped off the road in bits (or equivalent) and brought in under a blue light, we’re really not very interested.’

And that is how it seems from their perspective, most likely. An hour in their shoes and you would probably see their point. But an hour in your shoes and they would probably see yours! Unfortunately, in the barely-controlled chaos of A&E there just isn’t the chance for either clinician or patient to get acquainted. So, it seems to me, there can be a clash between between what the patient wants/expects and what they feel it is their business to give, and no way of resolving that mismatch in a way that helps either to understand the other. For sure, that can feel very personal and insulting, even if they didn’t mean it that way.

I am sorry that you had such a bruising and unsatisfactory experience. I hope that you get the support you need from the Neurologist’s department.

Alison

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