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

I have MS and it really isn’t as dreadful as you first think when you get diagnosed. Very scary at first though.
if that’s what it ends up being then im happy to discuss anything with you. Been living with it around 20 years now

Here to hand hold and ..........

Your story sounds so similar to me.

I have diagnosed b12 issues and receive 8 weekly injections . Megablomastic aneamia and numerous issues with my nerves including trigeminal neuralgia.
Back in May I started experiencing episodes where my legs get pins and needles while standing and then become numb resulting in me falling a few times. Average of 3 hours before feeling comes back and I can move again.
Arms are now an issue too. Am unable to lift a kettle or open jars and bottles.
I'm waiting for an appointment with a rheumatologist who hopefully will sort an MRI.
A&e basically told me after my last fall that they can't do anything unless I lose control of my bowel/bladder.

Please don't panic about MS if you can help it. I have it and the right treatment will be out there for you if you have it. The episodes of numbness etc wear off and you won't always feel this awful. Good luck.

I’m sorry you are going through that. It’s so scary. Were you offered a CT in a&e? I’m concerned the doctor I spoke to may have just been trying to tell me what I wanted to hear and actually it just ends up being a really pointless and distressing trip. Plus I’ll miss my blood test appointment tomorrow morning.

Head to Facebook and join the Pernicious Anaemia/B12 deficiency support group - lots of very knowledgeable people in there and great files including where to source supplies (I get mine from pharmacy in Germany).

Contact your surgery and ask for printout of last blood tests and post entire lot in the forum.

It's almost impossible to not have enough B12 in your diet unless vegan, so likelihood is that no matter how much you take (including supplement), your body just can't absorb or convert. In which case injections only way forward.

If your B12 is low and you have neuro symptoms- protocol is to self inject every other day until symptoms stop improving (it can take months).

There’s B12 deficiency and there’s Pernicious Anaemia. Good support on this site healthunlocked.com/tag/vitamin%20b12%20deficiency. There’s also a PA forum. You also need a good supply of Folic Acid to support B12, so if you have B12 injections make sure you take Folic Acid too.

You should also probably start Folic Acid 5mg per day to help B12 absorption x

I had similar symptoms, gp initially diagnosed B12 deficiency - was injected with radioactive b12 and had to collect urine for testing levels. 8 years later i was eventually diagnosed with MS. It's not a life sentence - that was more than 15 years ago, at the time i had my own business, and still have that now. Good luck

Similar to you after my last fall 2 weeks ago I cancelled the ambulance as feeling came back after 3 hours and I was able to move. A friend took me to get checked. They gave me an x Ray of my hip ?????
I was then sent home and told if I fall again to call an ambulance while I'm unable to move (that's what I did but then feeling came back before the ambulance arrived) and that it's not an emergency unless I poo myself!

I've looked into private MRI but it's out of my financial capability so I have to wait.

Can you travel to A&E yourself at all?

Have a look into methyl folate and methylcolbamin. A percentage of the population have a mutation which means they can’t methylate b12 and folate. They need to be methylated to work but most supplements contain the non methylated form as your body methylates it. If you have the mutation your body can’t. You can buy the methylated supplements on places like Amazon.

Here to handhold. I hope the wait isn't too long

Hi OP, is there any way you can get to A&E by yourself? In a taxi? Neighbour drive you? You will get a full MOT once at the hospital, although the wait is likely to be long (decision to admit currently 8-10 hours at my trust). They may admit you whilst waiting for
The results and they may order a CT scan to be undertaken at next available emergency slot, or they may refer you back to your GP for him to request a scan...all depends how poorly you are. I had a badly broken elbow and needed a scan to see if the nerves were damaged before my op, and as I was admitted on a Friday evening I didn't get the scan until Monday morning and the op on Tuesday. It's a very broken and frustrating NHS at the moment. I do think you're doing the right thing though, you need to be seen, you just need to buckle up for the wait. Have your bag ready with PJs, phone charger and earphones.

@OliveRanch you can buy the ampoules in from Germany. There is a fantastic Facebook group with a b12 protocol to follow and lists of places to source supplies. Even Amazon Germany sell them though I've found them to be more expensive than other sites. I instantly thought B12d when I started reading your post. Sadly it's very poorly treated in the UK and you might need to seriously consider self injecting. I SI every other day.

I think you need to be mentioning Transverse Myelitis. You need steroids. A lot of MS cases are diagnosed as TM first but a TM case can be more disabling more quickly.

I’ve cancelled the ambulance. They said it was likely to be a long wait as they’re very busy. I’m able to walk a bit easier now, although still not properly, and the burning in my legs and tingling has pretty much stopped. I don’t know if this will be the wrong or right thing to do but I can’t handle 8+ hours there on my own after the trauma I experienced last time (I was assaulted in A&E).

I’m going to get a taxi to the GP surgery for my blood tests tomorrow morning. It might be that I have to go to a neighbouring hospital if they still think A&E is necessary.

I, perhaps stupidly, called 111 back to let them know in case they contacted me again, and to ask whether the notes could be handed over to my GP. The call handler had a massive go at me. I feel like such an idiot and time-waster.

This is the Tory government’s own report summary on how a hard Brexit would affect the nation. It’s simply not true that Brexit is helping the less well off and better educated. It suits the likes of Jacob Rees-Mogg that you should think so though - Brexit means he can continue not to pay full tax on his vast wealth. Tory party and its donors have done v v well. Ordinary people not so much.

Sorry - it didn’t attach

Why did the call handler get cross with you op? Because you cancelled and they don't think you should have done?

It sounds v unprofessional.

I'm so sorry you're going through this

Sorry - wrong thread.

Thank you. Do you know if this information is available outside of Facebook? I don’t have an account, although I will join if it isn’t available elsewhere.

www.ampavit.com/

I have been buying b12 from this company for the last year.
I asked my nurse at GP to check it and it was approved. I self inject weekly (would do more but cost affects it). Buy needles from
Medisave.

I’m not sure, he was just exasperated and annoyed and asked me what the point of my call was. He launched into a bit of a lecture and said if the GP said I needed an ambulance then I should’ve waited for the ambulance and shouldn’t have cancelled it. Then he said ‘now we need to do an assessment all over again’ and sighed. I said I didn’t want to do another assessment, that I would instead see my GP in the morning and was well aware it was my decision and risk. He said they wouldn’t be handing over any notes as that’s not how it works. I felt awful.

You're not an idiot and you're definitely not a time waster. Time wasters aren't considerate enough to call 111 back if they think they can hold out till the next day.,Thats called being thoughtful. The call handler shouldn't have been somunprifessiinal. Its not their job to be so judgemental. Hooe you feel better soon and all goes well with your appt tomorrow and that you get some answers soon.

Thank you so much. I will order some and also buy the more easily-absorbed version of folic acid (can’t recall the name offhand).

And thank you everyone, I’m so grateful for your support tonight.