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

You have referenced a few sprays. Bring those sprays along to the consultation. Best of luck!

This is very good. There can be so many reasons for your symptoms, which were similar to mine. Although B12 is quite a common and luckily easily fixable reason. So knocking off and ruling out stuff is absolutely the way to go. Then the neurologist has something to go on.

I’ve seen a neurologist for similar and they ask you about symptoms (such as do symptoms come on after a hot shower?) and how they feel, whether they are constant or intermittent.
Then they do all sorts of non invasive knocking on the knees walking a straight line tests. I was scared before mine, but actually it’s very reassuring to finally be seeing someone and get some clarity.

For me they still don’t know what it is, (a high number of neurological symptoms dont’ have a clear cause), but at least major conditions can be ruled out. Or if they can’t, they catch them in good time and can usually be well managed.

Probably as GBS is an acute presentation, but I have a condition called CIDP which is basically chronic Guillan Barré and has very similar presentation to the op. I had progressive symptoms for several months and when I landed in a&e as I couldn't walk they finally got round to referring me to neurology and I got diagnosed about 6 weeks later.

So no reason my b12 or folate should be low unless there’s an absorption problem I think.

There are several reasons it can be low over & above not eating enough.

Genetics mean you can't absorb properly... this can affect other vitamins too such as folate & thiamine so best avoid folic acid in favour of folate when taking B12 injections
Gastro resistance drugs such as Omeprozole
Heliobacter pylori infection
Gastric surgery,
Nitrous Oxide use
Certain antibiotics & more

It's only fixed with B12 injections & the correct co factor vitamins

Are you on any medication for your stomach? Lansoprazole, Omeprazole? They can decrease absorption of everything

No.

Are you on any prescribed medication?

You referred to CT scans and MRI in this thread or the other one. Have you had either scan recently?

Yes but nothing that interferes with b12 absorption. I’ve been very clear about what I take (inc. supplements) when speaking to HCPs and nothing has been flagged up.

@OliveRanch

Don't miss the video I posted below. It was a godsend to us, especially fir DDs diagnosis when her rubbish doctors were insisting that kids couldn't be deficient. I found showing the video to her doctor helped them to realise I was right & treat her

Sometimes they don't check.

Have you given a full list of every supplement and every prescribed medication to your doctors?

No, they didn’t do any scans yesterday as they didn’t believe I’d had a stroke (neither did my GP or I but I guess they had to check!) and they don’t have a neurology department at my hospital anymore, hence having to go to a different hospital to see the neurologist and for the scans.

Oh & Celtic ancestry puts you at higher risk of the hereditary version of B12 deficiency, but anyone can have it

Thank you! I didn’t miss it - sorry I forgot to respond. I will watch it properly later. I guess now that I’ve been referred I’m at the point where I’m surrendering to the experts rather than continuing to do my own research as I think I was beginning to drive myself a bit crazy. One of my GP tests yesterday morning was methylmalonic acid which is a pretty definitive b12 test apparently, but it’s done in London I believe and takes a while to come back.

GPs and A&E doctors are general medicine. They do a very basic blood check to look for obvious indicators of imminent death but they do not do a comprehensive blood check covering every faculty in medicine. You need to be a spokesperson for yourself. It should not be that way but that is how it is in the NHS. They're fighting fires. They don't necessarily know what to do if the initial FBC looks ok. There are a lot of things which are not tested for in a FBC.

The most useful tool for a doctor is a full history. As I said, please include everything and write it down.

The MMA test is only definitive IF there's no underlying kidney trouble, which can go hand in hand with un treat deficiencies... it was my kidney consultant who diagnosed me.

Just keep that in mind.

"Functional B12 deficiency" is another issue & the only way B12 deficiency can be fully ruled out as a cause, is by giving you a loading dose of B12 injections with co factor vitamin (folate, iron, complete Bs & high potassium foods such as coconut water)

You can be masking a symptom by taking supplements. When you get your appointment, please stop taking the supplements (sprays) that you take about 48 hours prior to the consultation.

Have you considered heavy metal poisoning? Especially as you eat fish, which can contain mercury (some people are more prone to accumulating it than others).

It can cause a wide range of symptoms, including the ones I've seen you mention in both threads.

Haven’t read the full thread, so sorry if this has already been mentioned, but you can get an active B12 test done through online companies, such as medichecks. Worth knowing that as the NHS is so crap.

You can get an active B12 test on the nhs too, it's just not the standard Serum B12 test, but it exists. We offered to pay for it via the NHS private medical which at the time was £50, so much cheaper than going fully private. They didn't charge us in the end either as DD was diagnosed

I personally don't care much for medicheck, as I only found out that their MMA test wasn't suitable with any kidney function problems AFTER I bought & paid for the test, nothing on their website to warn me at the time & they ignored my complaint

I really hope this isn’t the case but Motor neutron is the other one that sit alongside MS with symptoms. I hope it’s something simple and an easy fix like b12.

sorry your mum is a bit rubbish, you deserve to have people who care about you rallying round right now, it must be so scary. Sending you a virtual hug!

Typically with Motor Neurone though you don’t get sensory symptoms, mainly weakness - legs, tripping, dropping things, difficulty swallowing, breathing problems.

That’s quite bad. As most of the expense would be the testing, not the kit, I would have expected them to refund you.

My mum finally got back to me, 27 hours after I tried to ring her and sent the message I was in hospital. She said she would’ve replied sooner but her sister was staying She seems completely uninterested. I’m not sure why I’m surprised, she’s never been very interested in me. Oh well.

To add insult to injury, I put some oil in a hot wok then proceeded to drop the bottle of oil which has spilled all over the floor and inside a cupboard. The only saving grace is that DCat wasn’t under my feet at the time, and has dutifully vacated the area to retreat to his cat tree.