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

Absolutely know what you mean op. I was fobbed off a lot by the gp when I first had my ms symptoms.
At one apt I burst into tears because I knew something was wrong with me.
He handed me a prescription for anti depressants.
I never took them because I knew it was something physically wrong but it was a tough road to get along.
i was actually helped by a&e visits as I went two nights in a row and the same nurse saw me and passed on to the doctor that it was worsening and serious.

I’m not medical. The study talks about higher serum b12 in supplementation as opposed to injection. My first question would be, is that because the group having injections is actually using the b12, whereas the group having b12 supplements merely has raised serum b12 levels that the body cannot use. The study doesn’t talk about what type of b12 ie whether the supplements are methylated.

Hi op. You’re not imagining these things. I have shied away completely from the nhs as I’ve been severely gaslit. Just one example. I have chronic pain, fibromyalgia and chronic fatigue. The consultant I saw for chronic pain told me I Deffo didn’t have fibro. When I paid to see his counterpart in the private sector, he diagnosed me and told me the nhs consultant doesn’t believe in fibro so will never diagnose any of his patients with it etc.

@OliveRanch i imported my B12 from here. I just used Google translate. My GP does give me b12 injections but won’t budge on having them more frequently Than 12 weeks so I top myself up. They arrived within a couple of days.

www.versandapo.de/vitamin-b12-depot-panpharma-1000-mygml-iniecto-lsg-10x1ml-pzn-16199653@

You seem very focused on the B12 deficiency, I think you need to move away from this diagnosis and keep an open mind. There are thousands of causes of numbness and weakness in limbs.
I wish you well.

One of the most common autoimmune diseases can cause this and it's worth looking into because everyone overlooks it: coeliac disease. (Yes, the one where you can't eat gluten)
I have this and my only symptoms were neurological. The pain went on for years in different areas and they too were thinking gynacalogical as often the pain is in the same area, then last year my health just nosedived and like you I experienced a deterioration over a course of weeks where my whole body went numb (it was even my face for me) uncoordinated movements and weakness, light-headedness and nljtted vision. It was horrendous and the hospitals were useless. After presenting to A and E I'm not joking about 4 times, I got the MRIs which ruled out various things including MS. But once they'd ruled those out they just left me and said they thought it was psychological. But I knew it wasn't do I did my own research and the one thing that kept coming back wad coeliac disease that affects the nervous system, gluten ataxia they call it.
Within 2 weeks of cutting it out I saw an improvement and within 3 months I was much better but it took the best part of a year to be 100%. Beware that to get officially diagnosed with coeliac disease you must continue eating gluten through the diagnosis but I didn't do that so I don't have it officially on my record.

If you read my other thread I’ve linked to in my OP you will see I’m very much keeping an open mind, have been to the GP a number of times about these issues and have requested a referral to rheumatology. Unfortunately an open mind is limited by what the NHS are willing to investigate and the wait times for their services.

@Bloodyel thank you. I was tested for coeliac disease but it was negative.

It is possible to get a false negative on the initial test for coeliac disease especially when it is mainly affecting your nerves, but of course there are many other things it could be too. Best of luck OP.

Have you been tested for diabetes? That can cause Peripheral neuropathy

Nothing helpful to add but wanted to offer huge sympathy .Is there anyone who could support you ?Come to A&E with you if necessary ?
Keep going ,keep asking .You're not being pushy .

If you’ve experienced an episode of numbness, weakness and you still have ongoing reduced sensation, then I would prioritise a neurologist personally.

If you don’t want to go to A&E could you afford an appointment with a private neurologist? That would cover some basic neurological testing and confirm whether this is potentially a neurological issue that needs further investigation.

If you can find a consultant who does private and NHS work, you could see them privately first, get immediate feedback and if they think it necessary, go back to your GP and request referral to their NHS practice. It may be a long wait to see them on the NHS but at least you’re on your way.

Btw endo, while not autoimmune itself, has been linked in some studies to autoimmune illnesses such as MS, Sjogrens (which also needs to be considered), Lupus, IBD etc.

So the fact that it’s flaring simultaneously - you may be right there’s a connection, the inflammatory aspect of endo may cause or reflect immune imbalance.

I agree about keeping an open mind because there are other causes of high MCH levels than B12/folate deficiency.

@PixieLaLa yes, tested recently and no diabetes.

@IrisVersicolor thank you. I have just come out from seeing the GP who was lovely. I started crying and saying I was so embarrassed, mortified to be there again and they must think I’m crazy.

He asked me to do various things. I can’t balance with my feet together and eyes shut. When I try to walk in a straight line my feet turn inwards. He found my reflexes weaker on one side.

He’s arranging for me to be seen by a neurologist, hopefully today, in another hospital in my area (his decision, I didn’t say anything about A&E!) and have some brain scans and further tests. He’s going to contact me again around midday to let me know what’s happening.

I’m trying not to panic but obviously thoughts like, what if I never walk properly again are going through my head. This is so shit.

That’s interesting. The blood tests today included ANA and rheumatoid factor so I’m hoping that if it is autoimmune something will flag up. I had an ANA in March but it was negative. Never had RF measured. This is my worst endo flare since my surgery six months ago. I normally avoid painkillers as much as possible but I’ve had to take 30mg of cocodamol on three occasions over the past week, which is really a last resort for me. And it still didn’t help that much.

💐

That’s very good news about the referral, good luck 💐

So glad that you were able to see a GP and that he his acting .

I would suggest that you ask them to test your magnesium levels when you go to hospital today. I'm not a doctor but I've had similar symptoms to what you've described and my magnesium was very low (and my potassium). Potassium is routinely tested but magnesium rarely is - certainly not one they usually test for in A&E.

It's just something to ask. Like you, I too couldn't walk in a straight line to the doctor! I wandered off at a 45 degree angle lol.
I'm glad you're seeing a specialist though as that's just a very wild stab in the dark. There can be multiple reasons for those sensations.

British B12 levels for treatment are way lower than European ones. I was told my symptoms were menopausal and age related when I’ve always been fit and healthy prior. Numb limbs, tiredness and eyesight issues that were very frightening.
finally a Dr reread my bloods and started me on B12 straight away, he changed my life.
I now self inject every month, hopefully it is B12 as it’s easily treated once identified.
good luck.

I wish I had someone to go with me. I’m not even sure how I’ll get there as the hospital is in another town and I guess I’m not going to be allowed to drive. I’m going to speak to them about whether I would be able to claim back the cost of a taxi (low student income).

I'm probably way off track and the longer term problems mean I'm almost certainly wrong but have you considered guillane barre syndrome?

Perhaps unconnected to your longer term symptoms

Do you have anyone you can ask who could drive you?

No they’re really not horrible. They can’t advise on painkillers if they’re call handlers and not medically trained

Also I’m not surprised the 111 call handler got annoyed with the OP when she called back.111 is under immense pressure, the Op wasted the initial call handlers time, a doctors time on calling back etc.

That said, I do wish you well OP.