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

Sounds so scary OP. glad you’re feeling a bit better

Please keep me updated how you get on. It seems we may be on similar paths.

No problem. I’m sorry you’re also going through this I’m not sure if you read my other thread I linked to - does any of that resonate with you?

Could it be a mini stroke?
I think you should of kept the Ambulance, but only you know how you feel

I've read this other thread and agree you need a rheumatologist, but be warned it can take ages fo really them to figure out whats wrong. So many auto immune diseases have such similar symptons.
Your symptoms are very similar to what I experience with Lupus including the numbness and burning sensation, which I mainly get in my legs. My kness are burning up atm, it feels like I'm sunburnt.
I was diagnosed on symptoms as my ANA bloods were clear, getting regular bouts of pleurisy was what got me diagnosed.
Good luck 💐

Sorry you have cancelled the ambulance, please do call them back if you have another turn. Please also try think positively of A&E, despite your past experiences. I've been there alone, for hours and hours (most recently 27 hours) and I know it's not nice. But lots of people check in on you. There are volunteers handing out tea/coffee. HCAs offering you sandwiches and then trying their best to find one you like. Your obs are regularly checked. And most times you'll find people in the same situation as you desperate to make small talk. If you take things with you, like phone, book, kindle etc, time does pass. And you'll get the answers you desperately need. I wouldn't have found out what was wrong with me (which was a bone infection) had I not gone to A&E. My Gp didn't do bloods, and instead referred me for a routine X-ray which I still haven't had now. Trust your gut, go get those answers.

My mum had pernicious anaemia and was very unwell until she got her diagnosis after collapsing and ending up in a&e. She only got tested because she mentioned her grandmother had it. She had numbness, brain fog, breathlessness, joint pain, exhaustion. I think the symptoms are similar to MS but with regular b12 injections she became much better. I think its intrinsic factor that needs to be tested. Hope you get help and answers soon

Ambulance controllers are utterly horrid op. Take no notice of the little Sh1t. A year ago when I was lying on the pavent in the pouring rain in my village with a wrist that needed surgery and a severely fractured vertebrae a dipstick from the ambulance service told me if I was in pain I could take ibuprofen or paracetamol but needed to get advice from a pharmacist first. He got very shirty when I asked how he thought I was going to get up and walk to the pharmacist. Told me to Google. I'd been on tha pavement in the rain for over an hour then and they had already said they couldn't assess both injuries - only the worse one - couldn't comprehend that I couldn't tell which was the worse one without an XRay machine. I went for the wrist as that looked mangled and out of shape. It took two hours.

Horrid, horrid people so don't let them make you feel bad.

I hope you get some answers soon. I was in your shoes earlier this year. My symptoms have slightly improved but still no idea what's wrong with me.

I was reffered to neurology, cardiology, had lots of tests and then rheumatologist. Nothing found wrong but my bloods aren't optimal either. I'm on high dose vitamin D on the recommendation on the rheumatologist. Rheumatologist recommended fatigue clinic but my gp wont do the referal unless I go onto high anti depressants which I dont feel I need. Go wants to put it down to depression but I'm not depressed. I'm toying with taking them just to get to the fatigue clinic.

My vitamin D was within range but only just. Same for iron. Gp is always happy if things are in range. But consultants less so. A dermatologist told me when I was losing my hair that iron within range just means your not dead. Theres no extra left to make hair and nails etc as it just about ticking you over.

Lots of little things just about ok can add up to a bad quality of life.

Gps and the NHS dont treat the body as a system I have found. My gp has diagnosed allergic oedema but has zero interest in what I'm allergic to. I'm fairly certain as a biology graduate I'm not allergic to anything. In my case taking up some fairly ( for me) energetic exercise has relived my symptoms slightly. That and the vitamin d

You know people have to follow scripts? It's not their fault
They can't say "yes take paracetamol" because someone will give it to someone who is allergic, shove it down the throat of someone not breathing etc etc
Also for trauma they have to assess the worst injury, the system physically won't allow you to click arm AND leg, you have to choose one
If they don't follow the script then they risk losing their job or ending up having to explain in coroners court why they went off script. If they follow the script/system exactly then they are protected

They spend all day and night taking calls to help people, they aren't trying to be horrid or awkward, they're just doing their job

You sound very much like me with b12 & folate. I got fobbed off for years. I joined the pernicious anemia group on Facebook and have not looked back.

Hand hold, had similar and just to say if you’ve had B12 deficiency then this is likely - but you do have to insist on the a good blood test for B12 (arent’ there two types of test, as one is for how much B12, and other for if the body can USE B12) iron, also Vitamin D (not usually done and quite hard to get sometimes).

I had numbness and tingling, sometimes my eyes affected. Quite scary. I was referred to a neurologist as it happened a few times and got worse each time, and had 2 MRI scans and bloods. Please don’t be scared. I looked up a lot about MS in a panic and have a relative with it, and honestly it’s amazing how much treatment has come on. Most people with MS manage it very well and lead good lives. Luckily for me, my MRIs were clear and neurologist couldn’t find a cause, meaning I am on a ‘watch list’ as it may come back, but I’m no longer frightened.

Also, it turns out that my B12 was ‘normal’ but only just, and my Vitamin D was low, so I do think iron/B12/VitD was really worth checking properly and with GP, to make sure you are OK with blood checks. Take any supplements with the GPs go ahead rather than try and guess. And if you are very worried, if the blood work is fine and not the issue, it’s very sensible to get an MRI and can rule out a lot.

Have you been tested for diabetes? Numbness can be a symptom

Could you not of got a taxi by the time an ambulance turns up you could if been there an seen.

I have to have B12 injections and folic acid top ups every few months - I can tell when my levels are dipping as it's really crippling.

While the links to the groups people have shared are excellent, I wouldn't be too keen to go down the route of self-treating/self-diagnosing just yet. These are really severe symptoms you're experiencing and if you self-treat you could end up disguising what's really going on. Once you have a thorough check over and a diagnosis, if your GP still refuses to treat you properly, then you can go down the self treatment route at that point.

After DH's experience at A&E on Sunday night, I'd say don't hesitate. He had been having excruciating pain in his calf while I was away visiting family, we live very rurally, so into the nearest hospital, 40 minutes' drive away. The place was deserted, apart from the emergency doctor, whom we knew. I told her I was worried that it might be DVT. Wrong answer. Lecture about doing heavy lifting, that it was a muscle sprain, and he should go away and watch some Youtube clips about avoiding bad posture. Next day, he couldn't get out of bed, I couldn't lift him, so ambulance back to distant hospital. Long wait, of course. The day doctor's diagnosis? DVT. No scans available, so we paid to have it done privately. Immediately a leaking popliteal artery aneurysm picked up. Back to the hospital, into a helicopter, and to the specialist hospital 300 km away, 3 days after his calf was swollen and cold. Fortunately, my nephew is a vascular surgeon there and kept me in the loop. For a while there, it was going to be amputation. now it's an arterial transplant, and he's under anaesthetic at this very moment. 3 wasted days with unnecessary faffing about, could have been fatal. Just take care of yourself, and get seen. Good luck.

Could you have a gene mutation that means you process B vitamins less efficiently?

MTHFR mutation is quite common in the population. I found out I have it as part of tests into recurrent miscarriage (although it didn't cause them).

Don't think they'd routinely check it on NHS but you could do a 23andme.

If you did have it you'd just need to buy methylfolate to supplement your folic acid and methylcobalamin (b12). The 'methyl' versions of these vitamins mean they're already processed and more bioavailable so your body doesn't have to do the work.

I was reading this and thinking that it sounded like B12 deficiency until I read this article later.B6 in otc supplements linked to toxicity & neuropathy

I have MS op and this does sound very similar. Shortly after my inability to walk I got optic neuritis which sort of confirmed the thinking. Please feel free to DM me if you want to chat. Hope you receive some medical help ASAP.

Hi OP, I have MS and what you describe sounds familiar - but I remember from when they diagnosed me that there were dozens of other possible explanations.

I was doing a masters at the time and felt like I'd slammed into a brick wall. 25 years later I am in full - time employment with kids, limping but still walking, even running a bit.

If it's MS, and maybe also if it isn't, find ways to treat and take care of yourself, and try to not do things with ground teeth, iyknwim. xx

You could have malabsorption. B12 deficiency can cause your symptoms. If it doesn't differentiate between stores and free B12 the test doesn't really tell you enough to say, treatment if not contraindicated would be the best way to say if it was the issue. I know I was very badly effected from low iron in my blood, despite having good iron stores.

This study says sublingual B12 is more effective then injections. pubmed.ncbi.nlm.nih.gov/30632091/
That might be an option to try if you can't source the intramuscular b12 and should avoid any possible digestive track absorption issues. I've had B12 injections, which didn't make any difference for me despite B12 anemia. They did cure the amenia just didn't help my symptoms.

Hope you find some help with your gp today

Another was MS here OP, I was dx 10 years ago, your symptoms do sound very familiar to me, however I have not been b12 deficient or ever had anemia.

Sorry the NHS has let you down today, but not an usual to hear sadly.

See your GP today, I assume you have been referred to Neurologist? I know waiting lists are crazy at the moment, I expect Neuro will want imaging, MRI head, cervical and whole spine, I had when I had my first acute inflammatory attack, which was Transverse Myelitis, my second attack was a very sudden onset of visual symptoms, which confirmed my MS dx after a further set of head MRI scans.

I know it’s a scary time, but you will be ok. The sooner you are dx the better, it may not turn out to be MS, but if it is you can start on a disease modifying therapy, if which they are many available now.

Hoping you feel better soon OP. Please update on how you are getting on.

Morning everyone. Thank you for your replies, I’ve read through them all carefully. Just one thing to clarify - the ambulance call handler was absolutely lovely, it was the 111 handler who was rude to me.

I am able to walk a bit better today but still not normally. I have just run a (lidded) pen over my legs and then pressed it into my skin. The sensation is quite reduced.

I don’t know if it’s related, probably not, but I’ve been having an endo flare the last few days. I have fairly bad cramps this morning which is adding to my woes.

My GP appointments open in 35 mins so I’m going to book the first slot I can get. My hospital has an ambulatory care service during the day that I was allowed to use before when I had a kidney infection, which meant not having to sit in A&E but in another area. I’m hoping my GP might be able to arrange for me to be seen there.

I know this might sound strange but after being gaslighted for so long by doctors about endometriosis and due to not being believed about another medical condition I had as a child, I keep feeling like maybe this is all in my head and I’m just choosing not to walk properly. Does that make sense? I’m afraid they’re going to say I’m crazy.