Would you go to A&E

[PurplePinapple]

Would you go to a&e if you kept getting electric shock type sensations in your head and face, along with chronic headaches, dizziness, numbness and tingling in arms, legs and feet, muscle twitching/spasms, muddled speech, burning sensations in legs and stabbing pains in legs? Been happening for a couple of months, been to drs, been referred to neurology. Appointment got cancelled and hasn't been rearranged. Do I go, or do I wait?

it's sounds horrendous... if it has gotten a lot worse over the last days I would go to A&E. it's dreadful how you have been let down.

And never ask on MN if you should go to a&e. Dozens of posters without any medical qualification will feel the need to step forward to tell you that you are unreasonable and that something cannot be an emergency because something has gone on for ages (I know of 2 people who got a cancer diagnosis after attending a&e because of delays to get referred and then again delays by sitting on waiting lists).

I have a DD with complex needs do get the added complication of being a carer. Please get seen. You sound very unwell and nobody should be left to carry on like that for months.

@dairyfairies I went to a&e the day before yesterday, they wouldn't see me and sent me to urgent care, I was there all day and they told me to go home and wait.. I genuinely don't know what to do

I am so sorry. I don't know what else to suggest. another a&e department? I have done that once when one hospital fobbed us off but DD was admitted in the other hospital as she was clearly unwell.

People wouldn't treat their dogs like that but think it's ok for another human.

If urgent care thinks it's safe for you to wait for your referral to a neurologist (which is clearly what you need) then you may have no choice but to wait, if you can't afford to go private. In the meantime is there any way you can arrange to take yourself off to bed for a few days and completely and utterly rest? No childcare, no housework, just complete rest. Many chronic and autoimmune conditions can be made worse by stress so pushing through and keeping going could be making your symptoms worse and harder to cope with. You may have already tried this, but if you haven't it may be worth a try as you sound like you're worn out and could really do with a break, if only for a few days.

@Prestel I would love to, I have no family here, just dh and his parents, FIL has had a stroke and MIL isn't very well at the moment either. I have no choice but to car dry on. Dh has work, but he has annual leave booked in a couple of week so I will be able to rest then. But at the moment I have no choice but to carry on..

In the meantime is there any way you can arrange to take yourself off to bed for a few days and completely and utterly rest?

OP already said this is not possible due to children esp a DC with SN. I don't think many understand what parenting a child with SN is like. There is no support, usually no access to childcare, no respite. You cannot rest as a parent no matter how ill.

My daughter had all these symptoms and was sent to A&E, because she lost vision in her eye and they were concerned it was a brain tumour , but she was diagnosed with MS

I have to add she was very lucky to get the diagnoses like that though , she had a brain scan and a lumber puncture , and they said they were 99% certain it was MS. She then saw a specialist a few weeks later so she wasn't on MS medication straight away , but she was given steroids and other medication.

I'm glad your DH has been able to book some annual leave, I really hope it helps. Conversely to the comment above, it's precisely because I have experience of being a parent of children with special needs and chronic illness that I know how relentlessly tiring it can be and the toll it can take on your health. A rest won't cure you, of course, but it could help you get a second wind to keep going until you get your appointment. It may also help you feel a bit more in control if you do discover that complete rest reduces the severity of your symptoms.

I think it's terrible your appointment was cancelled, you shouldn't have to wait. Many people are in the same boat because of years of underfunding of the NHS and it's appalling. I hope you get seen soon.

I have a lot of your symptoms (not all) and was eventually diagnosed with a rare neurological condition (not MS) by an neurologist. You might have to wait for your referral to come though to get answers.

In the meantime :-
: Be kind to yourself and rest when you can.
: Get yourself checked by the opticians, if you last appointment wasn't recent.
: Ask your GP to expedite your neurology referral.
: Ask your GP to give you nerve pain meds to combat the electric shock and pain in your legs/feet. Like Amitriptyline or Gabapentin. Nerve pain needs specific meds to be effective, normal pain killers just don't work.

Good luck.

So I ended up going to a&e because it just got too much, they've said all the electric shock type stuff seems like trigeminal neuralgia, and I now have tramadol, which seems to be making a difference, they've also managed to speed up my neurology appointment too, so that's on the 1st December, now just to figure out what's causing everything else. Finally getting somewhere now!

Ah glad they have managed to speed things up for you, roll on December and hopefully some answers for you

Just wanted to say OP that I suffered from all these symptoms and yes, it is very scary.

I too was convinced it was B12 deficiency but my results came back normal. I did read though that you can still be deficient due to malabsorption and that won't always show on the standard test. You need to do an active b12 test.

I didn't know that at the time do decided to I next myself. I felt worse to start with which I now know is common but continued. It took 6 weeks of injecting every other day before I started to feel better.

Add to this that I was right in the middle of the perimenopause and a lot of these symptoms can also be triggered by hormones triggered anxiety.

3 years later, I'm almost 100% symptoms free, since I entered the full menopause.

At the sane time, despite not keeping dates, some symptoms tend to come back every 5 or 6 weeks and disappear again after an injection so I do think b12 is an issue. I can't test for active b12 as you need to be free of b12 for 4 months and I'm not prepared to stop for that long. In the end, if I'm diagnosed with pernicious anemia, treatment will be injections anyway.

Do look into it. Your coelac issue is linked with b12 deficiency.

Yes I would also have gone to A&E if another attack had happened.

The UK system is broken, the 'emergency' is created by there being no other route to treatment. Once at that point an individual can only choose either to accept no support or to ask again at a different door. The UK no longer has a functioning health care system.

I am glad you went to A&E - and lo! they have helped speed up a Neurology appointment.

I hope you feel better soon .

I'd go

Just an update if anyone is still interested.. I just had me neurologist face time appointment. He said it's a migraine...

Have they offered treatment op? How are you feeling after receiving a diagnosis?

He didn't listen to me, i mentioned that a&e said they're 99% I have trigeminal neuralgia too and he said no it's a migraine. Along with my legs collapsing, my muscle spasms, wetting myself and everything else. He said about giving me beta blockers and preventative medication and said something about going back in amitryptaline

I'm sorry you waited so long struggling to finally have an appointment and then feel this wasn't satisfactory. Do you think you could ask for another opinion? It's so difficult isn't it, but do make a fuss if you feel you need to.
I had a similar experience with an absolutely horrible neurologist who couldn't let go of his theory that my symptoms were due to anxiety. In the end I had a second opinion and saw different neurologist who was much more helpful. Annoyingly the first neurologist I saw I paid to see privately because I was fed up of waiting, so not only was I humiliated and dismissed during the appointment but I also had to pay £250 for the privilege 🙄.
Good luck

@PurplePinapple I've just read your posts. Honestly go to PALS if you feel he did not listen to you. They will help you. Amitriptyline should however help with the neuropathic pain.

Just an update if anyone is still interested.. I just had me neurologist face time appointment. He said it's a migraine...

@PurplePinapple If you're not satisfied definitely push for a second opinion or as pp suggested PALS.

I was rushed to A&E in 2011 after sudden onset of full left sided numbness. Had a CT scan and told it was a migraine. It never sat right with me, my symptoms resembled a TIA not a migraine. I also didnt suffer migraines.

Fast forward to march this year I experienced (and still am to an extent) similar symptoms to you. Urgent neurology referral was made in April, finally spoke to a neurologist in July, had an MRI in August and guess what!!! It showed I had a stroke back in 2011, not a migraine!! I honestly think that's their go-to answer!

All contact with the neurologist seemed to stop so I pushed because I needed answers to my latest issues (numb chin, arm and leg numbness, stabbing pain in my jaw and ears, headaches, weakness, dizziness, burning sensations, flashes in my vision.

Tbf I managed to get a video call with a neurologist who spent over 2 hours with me going over all my old medical history as well as my new symptoms.

Low and behold, he believes half my symptoms are migraines even though my symptoms dont fit too well and coincidentally started the exact same time as an unrelated condition.

He believes the other half of my symptoms is down to Functional Neurological Disorder (FND) although my symptoms dont fit properly with that either 🤷‍♀️

It's almost like he's trying to force a diagnosis to tie everything up and close the case. I know there are other, more accurate tests he can do. But the NHS arent bothered. I totally understand your frustration, anger and upset.