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

My goodness @pollyglot I do hope that he’s OK and surgery was successful. What an awful time of it, but you sounded very on the ball and persistent, which is so lucky for your DH. I feel for you!

@Horatioshelmet I appreciate they are not medically trained. However despite not being medically trained they advised me to take paracetamol or ibuprofen and to see the advice if a pharmacist before doing so. How medically trained does any human need to be to tell a person with a broken back and severely broken wrist to get advice from a pharmacist before taking painkillers. When challenged they told me to Google a pharmacist and call them. My wrist was so badly fractures the median nerve was a millimetre from compromise and required surgery. My vertebrae was collapsed severely by more than 40%. And they refused to triage both injuries and acknowledge one might impact the other. They argued until they were blue because according to them I could steady myself with my good hand to get myself into a car privately because they refused to take account of the back injury. I appreciate they work off an algorithm but they are a) ridiculous b) unhelpful and anyone who think that's how they should operate has presumably had a double lobotomy. Add in the unhelpfulness and the jobsworthness and yes, they are horrid. There are other phrases that spring to mind.

The ambulance crew were fabulous and couldn’t believe what I'd gone through.

How did it go OP?

My GP called and said that the neurologist had told him they wouldn’t see me without first being assessed for a stroke, so an ambulance was sent for me and I was taken to my local hospital. I was seen triaged quite quickly and everyone was lovely. They noted that my knee reflexes were weak. They didn’t think I’d had a stroke but mentioned MS or possibly even Lyme disease since I went camping in a pretty wild area around the time the symptoms started, so they’ve ordered a test. They were particularly interested in my family history of autoimmune disease. They’ve now arranged for me to see the neurologist ASAP so I can have scans and further tests.

The numbness and tingling in my legs has mostly subsided today and I can walk much better, but interestingly the joint pains have come back.

I’m relieved to possibly be getting closer to having answers, but also scared. And mortified by how much of the NHS’s time and resources I’ve taken up recently, especially if it turns out they can’t find a cause.

I’m also feeling quite sad. I phoned my mum from the hospital but she didn’t answer, so I texted her to tell her I’d had a bit of a funny turn and where I was. She read my text but didn’t reply and hasn’t called back. We don’t have the most straightforward relationship I suppose as we were estranged for many years, but have become closer over the past year so it’s quite hurtful/confusing. I also confided in a close friend about what was going on but she didn’t offer to visit me/help in any way despite being off work, and hasn’t offered to see me over the weekend. If it were her I’d be there in a heart beat Feeling rather invisible/insignificant but just trying focus on taking care of myself now.

Did they do bloods?
Did they test calcium, magnesium, potassium?

Btw, at the end of the day, you'll have very few friends who give a fuck. It's not you, it's life.

What an unhelpful comment. Whether it sounds like MS or not, I’m sure this is not what the OP needs to hear right now.

my.clevelandclinic.org/health/diseases/17740-low-potassium-levels-in-your-blood-hypokalemia
my.clevelandclinic.org/health/diseases/23264-hypomagnesemia
www.ncbi.nlm.nih.gov/pmc/articles/PMC3279267/#:~:text=Symptoms%20of%20hypocalcemia%20most%20commonly,%2C%20circumoral%20numbness%2C%20and%20seizures.

They took four vials! I did ask what they were testing for but they just said ‘stroke bloods’ so I doubt it. I’ll mention it to the neurologist when I see them.

There are three links there for low potassium, low magnesium and low calcium.
Check whether any symptoms are familiar and also check whether magnesium was ever tested.

It's more urgent than that.
Do you ever get cramps along with the tingling?

Definitely worth considering Lyme Disease. I hope they get to the bottom of it soon

I doubt it’s any of those things as I’ve been taking 1200mg of calcium with vitamin D every day for the past three months, plus magnesium supplements on and off to try to help with PMS/endo. I’ll definitely ask the neurologist about it though. I’m still hopeful it’s a deficiency rather than a disease!

I'm presuming your potassium was ok, or they would have given you IV fluids.

No, I haven’t had any cramps (other than the horrendous endo ones on and off in my uterus atm!)

I'm on magnesium too but it dropped to 0.2 on one occasion.

They won't check for it unless you ask them to specifically. Tell them that you've a friend who's a doctor and she suggested it ;)

Can you check the first page of the blood results you posted previously? Potassium (K) would have been on the first page.

I had b12 deficiency in the past (though never had symptoms like this) so it seems to make the most sense.

This definitely sounds like pernicious anaemia to me, both DD & I have it & this happened to DD, she spent 2 years in a wheelchair before the medics finally listened & correctly treat her deficiency with b12 injections. Thankfully the injections reversed it all

Why aren't you on B12 injections? That's clear negligence right there if you have low B12 & weren't given injections

Not to sound gross, but are your bowel movements normal?

Do you eat well? Any diarrhoea/nausea/vomiting? How is your memory? Does the pain ever feel like it's all over you burning? Like a nerve pain? Does the pain feel internal?

Serum potassium 4.3 (range: 3.5 - 5.1 mmol/L)

Ok, potassium is good, so magnesium will be fine too. Calcium?

This video gives a good overview of just how bad B12d can affect you. My DD was pretty much the young lad in this video.

My DM was misdiagnosed with MS, but had PA, symptoms can be very similar, but pernicious anaemia is largely reversible with the correct treatment

The other specialty I would try to get referred to is Endocrinology.

@Dalint

BMs fine apart from some constipation and mucous around the time of my period. No diarrhoea.

The burning sensation was new, it was in my arms and legs. I constantly feel like I’m overheating from the inside though and find it really difficult to cool down. It often feels like I have a fever. Occasionally I have low-grade fevers that come on and then disappear randomly.

Memory OK but my working memory isn’t great, I often find myself in the kitchen or whatever and can’t remember what I went in there for. But not sure if that’s just a normal part of getting older. I have to deal with a lot of numbers and data when I’m studying and I’ve noticed my ability to hold it in my head for short periods has deteriorated somewhat. I’m constantly having to go back over things, checking and re-checking which takes up so much time.