Handhold please - A&E after sudden numbness

[OliveRanch]

I’m really sorry, shamelessly posting for traffic. My other thread is here www.mumsnet.com/talk/autoimmune_disease/4602352-should-i-give-up-pursuing-a-diagnosis?page=1

I’m waiting for an ambulance. I suddenly felt very peculiar this evening and both my legs went numb, although in hindsight I haven’t been quite right all day. I now can’t walk properly. Both legs as well as my arms are burning, my hands, arms and back of my neck are tingling. The soles of my feet feel numb. I’ve felt unwell for a while but never had anything like this before, it’s escalated so quickly. They are talking about a CT scan and MRI although I think the actual problem is b12 and/or folate anaemia.

I’m on my own and don’t have anyone to go with me. I’m terrified of A&E after a very traumatic incident there a few years ago. I’m less worried about the scans, it’s just having to be back in that waiting room. Especially without support. I know I need to be brave though.

I just need a little bit of a handhold / distraction. I’m so anxious

If you have low B12 you will feel utterly dreadful!

Oh and my diet is good. I don’t eat processed foods apart from biscuits which are a bit of a weakness. Lots of fruit and veg every day. Small amounts of dairy each day, eggs a few times a week. Fish fairly regularly and occasional lamb. Also use B complex spray most days. So no reason my b12 or folate should be low unless there’s an absorption problem I think.

When you see the neurologist, print what you've just written in this post.

How is your weight? Do you have a swollen neck in any way?

There can be an absorption problem.

Kidneys lol. Sorry. I'm throwing a lot of things at you. Your symptoms are very difficult to diagnose as only specialists will know what to check for and if you're referred to the incorrect specialist, they will only rule out conditions relating to the symptoms from their specialty.

How has your O2 and BP been when taken? HR?

My weight was one of the things that concerned me and that I went to the doctor about in the first place, especially together with the hot flushes/sweats and fatigue. I’ve always been slim but I found trousers became increasingly baggy. I was struggling with lack of appetite. I started to eat more fatty foods like avocado, cheese etc but found I wasn’t really gaining anything. I’ve managed to gain some weight over the past few months though and now have a BMI of 20.

I don’t have a swollen neck.

This is all good.
What might be useful to your Neurologist is if you copy and paste your responses on this thread and on the other thread as sometimes those answers will point the specialist to where to look or to what to look for.

O2 was 95-97%, BP 102/82 (a bit higher than usual, normally 90/70 ish), HR 80ish but was anxious in the hospital!

How long has this been going on and are you getting new symptoms or worsening symptoms? When have the symptoms worsened?

HR is perfect. O2 a bit low.

Be prepared to give a full history to the Neurologist. They'll have standard questions, but sometimes you will need to prompt them so to speak.

They will ask you when did A, B or C start. If your memory is dodgy at times, it's best to try to write out what happened, when it started, what it feels like etc. etc. INCLUDE ABSOLUTELY EVERYTHING, even if it doesn't sound like a symptom to you.

Your BP is a bit low but not alarmingly so. It would suggest a degree of dehydration.

If they ask you a question such as 'where is the pain?' You need to have a specific list. When pain feels like it's all over you, saying 'it's everywhere' won't help. You need to describe the pain and also where you feel the pain is originating from. Try to write out what I call 'A brief history of time'. So, when the symptoms started. What were they? When did they start? What has got worse? When did it get worse?

Diet.
Bowel movements
Urine
Pain
Memory

Anything that is bothering you.

Most important is what medication you are prescribed but also, what supplements you are taking. Include EVERYTHING. Antihistamines, vitamin supplements, prescribed meds, pain relief etc.

I’m planning on writing a timeline of symptoms like I did when I first saw a gynae about my pelvic pain. It’s easy to forget important things at the time. I’ll include everything even though it makes me feel like a hypochondriac

Lol, let's hope you're not referred to psychiatry 😂

If you're experiencing pain, I would recommend going to the appointment without having taken any pain relief prior to it. Only if that makes the appointment bearable. If you have taken pain relief prior to the appointment, you need to tell them.

The reason I am saying that is when the consultant asks you about the pain, you will be feeling it, so better placed to describe it. Did they give an indication of how long the referral will take?

I was diagnosed with a heart condition when I was 8. It took ages to get anyone to take me seriously and even after my diagnosis, when having a flare up, teachers didn’t believe me and I was told it was anxiety, nausea or just wanting to get out of doing sports then I had it all again as an adult when I started having symptoms of endometriosis. I’ve come to associate feeling unwell with shame and a sense of not being believed, being a burden/inconvenience etc. So this latest experience is really testing me

She said something about it being a rapid acute referral and likely weeks not months.

Your calcium supplement is a little on the high side if you are eating a healthy diet you may be overdosing. Look up hypercalcemia.

Hi op. Sorry to hear you're going through all this. If you can write down a timeline of symptoms for the neurologist. The amount of times I've seen mine and forgotten stuff (damn MS brain fog) best of luck x

Excellent. If symptoms worsen, you really need to call 111 again or 999 if you feel you need an emergency response. Please don't think that you're wasting anyone's time. You're not. You're suffering and something is causing it. Healthy people do not experience your symptoms. There is something not right. Finding out what it is is the equivalent of solving a problem to doctors. They love finding a solution. You are not wasting anyone's time.

B complex spray - flushing/tingling/burning sensation can be a reaction to thiamine or niacin on an empty stomach, can't remember which.

It's extremely important that you tell them about that diagnosis. They might not see it on their files.