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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Handhold please - A&E after sudden numbness

262 replies

OliveRanch · 04/08/2022 22:09

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 Sad

OP posts:
IrisVersicolor · 06/08/2022 21:14

I’m sorry your mum is so unsupportive, do you have friends who might be more so?

itsgettingweird · 06/08/2022 21:27

For those who have described having onset on neurological symptoms affecting mainly legs and bladder and not finding a cause have you ever had hereditary spastic paraplegia mentioned? Also distal neuropathy is another condition.

Worth looking them up as they are quite rare and I think it's quite niche to find a neuro who suspects this and/or diagnoses it.

Original poster
OliveRanch · 06/08/2022 21:41

IrisVersicolor · 06/08/2022 21:14

I’m sorry your mum is so unsupportive, do you have friends who might be more so?

I told one close friend who was off work and hoped she might offer to help/visit but she hasn’t, which has upset me as I wouldn’t have hesitated to be there for her. I haven’t told anyone else yet as I didn’t want to put them out. I hate asking people for things, always feel like a burden. I’m very independent but it does make things difficult when something like this happens.

OP posts:
IrisVersicolor · 06/08/2022 21:44

Sometimes you have to have the courage to ask for help. You probably don’t do it often.

Original poster
OliveRanch · 06/08/2022 21:50

We were texting while I was in hospital and she said she’d felt like she’d done nothing with her day, so I did suggest she could come and keep me company but she said she didn’t have the energy (she does get fatigued). But then a bit later send me photos of her out and about. Confused

But yes, I do need to learn to ask others. When I next speak to some of my other friends I’ll tell them what’s happened.

OP posts:
IrisVersicolor · 06/08/2022 21:54

Maybe not her then 😯

Illness does sort the sheep from the goats friendwise.

JS87 · 06/08/2022 22:39

Have you had covid around the time your symptoms started? I’m sure I’ve read of some people with long covid getting numbness/ tingling.

Original poster
OliveRanch · 06/08/2022 23:00

JS87 · 06/08/2022 22:39

Have you had covid around the time your symptoms started? I’m sure I’ve read of some people with long covid getting numbness/ tingling.

No, definitely never had Covid. I’m part of a Covid study so have regular PCRs and no antibodies.

OP posts:
BornBlonde · 06/08/2022 23:14

Sending you a hand hold

Fraaahnces · 07/08/2022 03:38

Hi OP… I know a lot of people are trying to comfort you with lots of ideas about what this might be. Please don’t get too hung up on these and wait until you get a real diagnosis. While I genuinely believe there is an issue, being thrown lots of possible diagnoses adds to the stress, and so does having to wait. Of course you should go directly to A&E if your symptoms worsen or you develop others.

RockinHorseShite · 07/08/2022 07:07

Hi OP… I know a lot of people are trying to comfort you with lots of ideas about what this might be. Please don’t get too hung up on these and wait until you get a real diagnosis. While I genuinely believe there is an issue, being thrown lots of possible diagnoses adds to the stress, and so does having to wait. Of course you should go directly to A&E if your symptoms worsen or you develop others.

@Fraaahnces

I know that is meant well, but do you have personal experience of the OPs situation?

I have been exactly where she is with my DD & trust me doctors can be very quick to miss an actual medical diagnosis & shout anxiety... even when you have a kid screaming in pain.

Twice over it has been thanks to my making posts like this & the replies I got, that actually led to a diagnosis

Dalint · 07/08/2022 10:54

With regards to your Mum, I have one parent (my mother) who LOVES hearing if I'm unwell and really loves to get the gory details as it gives her the opportunity to tell all her friends that I'm on the brink of death and thus obtain sympathy for herself. My Dad is the opposite. He only wants to hear from me when I'm chirpy, happy and healthy. I scraped the barrel with my parents lol.

I have a lot of fairweather friends too and sometimes, you're lucky if you have even one friend who will be supportive in a time of crisis or worry. If you know that certain people will not be supportive, sometimes it's wisest not to keep trying to get support from them.

Original poster
OliveRanch · 07/08/2022 11:33

@Dalint I’m sorry your parents aren’t more supportive. My dad would’ve been concerned and supported me (he was the only one to believe me when I first started having symptoms of the heart condition) but he died 10 years ago. His family, however, were similar to your dad in that they only wanted to hear that you were happy and healthy. God forbid there was something wrong with you and it was all ‘For goodness sake why can’t you just be WELL?!’ with much tutting and sighing, as if it were your own doing.

I’m not sure what to say to my mum in response, I probably won’t say anything unless she asks, and I doubt she will.

OP posts:
Hermonthis · 07/08/2022 11:35

@OliveRanch you sound very similar to me! I’m still going through MS testing but in the meantime I have been diagnosed with hemiplegic migraines - sometimes I don’t even get the headache.

The symptoms are very stroke like and I have to take a whole range of meds!

I also have iron deficiency anaemia which causes fizzy feelings in my fingers & legs, and I’m also being tested for Myasthenia Gravis and epilepsy.

When I first got poorly, I was in the middle of exercising and literally lost all sensation in my hands and feet - but the GP and Neurologist said “it could take years to suss this out!”.

Anyway, pm me if necessary, I’ve had all the same tests as you and had so many appointments it’s ridiculous. Sometimes neurological experts travel from across the UK to see me at my local hospital! X

Dalint · 07/08/2022 11:55

OliveRanch · 07/08/2022 11:33

@Dalint I’m sorry your parents aren’t more supportive. My dad would’ve been concerned and supported me (he was the only one to believe me when I first started having symptoms of the heart condition) but he died 10 years ago. His family, however, were similar to your dad in that they only wanted to hear that you were happy and healthy. God forbid there was something wrong with you and it was all ‘For goodness sake why can’t you just be WELL?!’ with much tutting and sighing, as if it were your own doing.

I’m not sure what to say to my mum in response, I probably won’t say anything unless she asks, and I doubt she will.

I recognise this 100%

Try not to get beaten down by it. We're here to vent to and sometimes we're the best you've got! MN has been a lifeline for me at times. Support is hard to come by. With MN you can filter what you read and only read threads that you're able to cope with at any time. With parents and friends, they can't filter us so they back off at times. That you recognise that your Mum only wants to hear about you when you're well is hopefully good for you to recognise. Perhaps change the messages you send to her to solution based? Instead of saying 'OMG, I might have A, B, C', change it to, 'I wonder what you'd suggest for A, B, C?'

Original poster
OliveRanch · 07/08/2022 11:56

I’ve been thinking about what to include in the list of symptoms/timeline for the neurologist and I realised I’ve had quite a few odd things over the years that I brushed aside and forgot about.

I guess it all started after I had glandular fever when I was 17, which took me a long time to recover from. Not long after I started experiencing painful electric shock sensations in my neck and back when drifting off at night and my whole body would jerk. It lasted a year or two but for some reason I never thought to go to the doctor. I also had random episodes of losing my vision, everything turning green and seeing flashing lights. I just assumed it was low blood pressure.

A couple of years after that one of my eyes randomly went droopy and saggy, as if I’d aged 30 years on one side of my face. It lasted about five days and then randomly disappeared. I thought it must’ve been an allergy or something and forgot all about it.

Around the same time my feet and legs became unbearable itchy, to the point I would be literally jumping up and down. There was no rash or dryness or anything like that, it was like it was coming from the inside. I was referred to a dermatologist and they speculated it was ‘neuropathic itch’ but weren’t sure. I just learned to live with it and it eventually went away after a couple of years.

It was after that that I started experiencing the night sweats. I’d have to make up the sofa every night so I could sleep on it after I drenched my bed.

A few years later I started to experience the electric shock sensations again, as well as hypnogogic/hypnopompic hallucinations, visual auras without headaches and occasional musical hallucinations. To be honest I just thought I was stressed/tired/mad.

It mostly went away until a couple of years ago when the hypnogogic/pompic hallucinations and night sweats started again, then all these other symptoms kicked off.

I never really thought to link any of these things together but maybe there’s something in it. I’m just afraid of coming across crazy or overly anxious about my health when I write it all down.

OP posts:
Dalint · 07/08/2022 11:57

I know that you might just want your Mum to say 'Don't worry, it will all be ok', she might not be able to express herself that way.

Dalint · 07/08/2022 12:02

OliveRanch · 07/08/2022 11:56

I’ve been thinking about what to include in the list of symptoms/timeline for the neurologist and I realised I’ve had quite a few odd things over the years that I brushed aside and forgot about.

I guess it all started after I had glandular fever when I was 17, which took me a long time to recover from. Not long after I started experiencing painful electric shock sensations in my neck and back when drifting off at night and my whole body would jerk. It lasted a year or two but for some reason I never thought to go to the doctor. I also had random episodes of losing my vision, everything turning green and seeing flashing lights. I just assumed it was low blood pressure.

A couple of years after that one of my eyes randomly went droopy and saggy, as if I’d aged 30 years on one side of my face. It lasted about five days and then randomly disappeared. I thought it must’ve been an allergy or something and forgot all about it.

Around the same time my feet and legs became unbearable itchy, to the point I would be literally jumping up and down. There was no rash or dryness or anything like that, it was like it was coming from the inside. I was referred to a dermatologist and they speculated it was ‘neuropathic itch’ but weren’t sure. I just learned to live with it and it eventually went away after a couple of years.

It was after that that I started experiencing the night sweats. I’d have to make up the sofa every night so I could sleep on it after I drenched my bed.

A few years later I started to experience the electric shock sensations again, as well as hypnogogic/hypnopompic hallucinations, visual auras without headaches and occasional musical hallucinations. To be honest I just thought I was stressed/tired/mad.

It mostly went away until a couple of years ago when the hypnogogic/pompic hallucinations and night sweats started again, then all these other symptoms kicked off.

I never really thought to link any of these things together but maybe there’s something in it. I’m just afraid of coming across crazy or overly anxious about my health when I write it all down.

It's important that you include that in your history when you see the specialist. The electric shocks are sometimes called brain shocks and some doctors are familiar with them but some are not. They can be side-effects of meds sometimes.

Try to write out as much you can with dates (approximate age if from a long time ago).
It's also extremely important to describe your current lifestyle (sleep, exercise, work, financial situation etc>)

Original poster
OliveRanch · 07/08/2022 12:02

@Hermonthis I’m sorry you’re going through this as well. It must have been so scary when you lost sensation. It’s exhausting seeing person after person and describing these things isn’t it? I may well PM you at some point if that’s OK, thank you!

OP posts:
Dalint · 07/08/2022 12:04

If you can tie in any medication you were on at the time of the onset of any symptom, that would be useful to the doctor.

Original poster
OliveRanch · 07/08/2022 12:05

@Dalint absolutely, I’m going to be as thorough as possible. Hopefully the neurologist will be happy to explore it all with me and won’t just brush me off.

OP posts:
Dalint · 07/08/2022 12:12

They will probably try to get you to talk about current symptoms rather than your history if they're impatient (some consultants are impatient). Try to bullet-point your symptoms to
Date
Symptoms
Prescribed meds at the time.

Try to make it something that they can read through in 2 minutes.

Then answer all the questions they ask. If they are not interested in your history, try to use your history as a reference for yourself during the questions they ask and then offer the written list for them to look over at the end of the consultation.

They may have a nurse present at the consultation. They can be less abrupt than the consultant sometimes.

The thing I found most relevant is your memory issues. You're 32?

Hermonthis · 07/08/2022 12:13

OliveRanch · 07/08/2022 12:02

@Hermonthis I’m sorry you’re going through this as well. It must have been so scary when you lost sensation. It’s exhausting seeing person after person and describing these things isn’t it? I may well PM you at some point if that’s OK, thank you!

Of course! Anytime xx

It was really scary at the time. I’ll never forget the neurologist testing my neck strength and there was none, my head just flopped about. He also tested the sensation on my feet - again, there was no reflex and he was so confused.

I have (with medication and time!) managed to start exercising gently again.

The single most beneficial thing to me has been cold showers. After a normal hot shower, I turn it to cold very gradually and stand underneath for a moment or two. This has long term benefits to neurological problems and my consultant recommended it (with caution!) and it’s been great.

I also have trigeminal neuralgia which is like shocks in the ear / face & neck. The cold 1 min showers have helped this…

I have no idea how it all started but it all started at once 😭

Dalint · 07/08/2022 12:14

Stress can cause memory issues so they will look to rule that out.

Original poster
OliveRanch · 07/08/2022 12:19

@Hermonthis that’s interesting… at the hospital I didn’t have any reflexes in my knees and the dr looked really perplexed.

I used to run and go for long walks, plus do lots of push ups. I haven’t been able to do any of that recently as I get so tired and feel weak and dizzy when I try. Just walking for 5 mins now is a struggle. I hope I’ll be able to exercise again soon and rebuild my strength.

I will definitely try the shower thing.

@Dalint thank you for the tips. Yes, I’m 32 going on 92 it seems Grin

OP posts: