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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:
Dalint · 07/08/2022 12:19

I would also print your history out in bold print with the symptoms and age in ALLCAPS.
Try to print in relatively large print (at least 12 point)
Try to keep it to 2 pages maximum
Top of the page first page, write out the symptoms you're currently experiencing in bold and bulletted.

Dalint · 07/08/2022 12:22

Try to remember and to remind yourself that you are the equivalent of giving a Sudoku fan a really complex puzzle to solve when you meet the consultant. They love solving problems. NERDS ;)

Hermonthis · 07/08/2022 12:26

I was 32 when mine kicked off! Xx

InTheCup · 07/08/2022 12:51

Glandular fever is highly linked to MS

Fadeout83 · 07/08/2022 12:53

OP do mention your history of glandular fever. I think I read somewhere that 100% of MS sufferers have had glandular fever. There is a link

CherryBlossomAutumn · 07/08/2022 13:01

Just hand holding again.

I’ve posted before but I’ve had similar weird symptoms that completely freaked me out. Weakness. Tingling. Electric shock type pain in different parts of my body. Feeling like my eyes were different sometimes. Like I said I still don’t know but I don’t get most of these symptoms anymore… so far!

Are you around menopausal age? The night sweats and hormonal changes can be linked to these symptoms.

However, the main, main thing is apart from the main ‘culprits’ such as B12, and more rarely MS or other things, that you are being seen to by a neurologist and you are getting all the tests.

I think only after then if there is no diagnosis, should you maybe re look at this thread and pursue other avenues. There is no point looking at rarer or other causes until you are properly seen and checked.

I would also urge you, if nothing is found, to see your GP and tell them what you might be looking into, just in case (for example don’t just self give yourself a lot of vitamins etc).

Original poster
OliveRanch · 07/08/2022 13:02

Oh really? In that case I’ll definitely mention it. I’ve read that EBV is being linked to more and more things now.

OP posts:
CherryBlossomAutumn · 07/08/2022 13:03

Also, in case you are freaked out, glandular fever is linked to MS, however most people with glandular fever do not go on to have MS. (It is more that those with MS have had glandular fever). So don’t worry too much at this stage.

IrisVersicolor · 07/08/2022 13:04

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.

This is all important information for the specialist - you won’t come across as anxious.

By the sounds of it Glandular Fever is when all this neurological weirdness kicked off. You probably know that Epstein Barr virus (GF) is associated with increased risk of MS.

IrisVersicolor · 07/08/2022 13:06

Oh sorry, I missed a page, this has been covered.

JS87 · 07/08/2022 13:19

The way you describe the itchy legs is what o get when I shave my legs in the shower. I have come to the conclusion for me it’s the mast cells degranulation after the combination of the pressure and warm water. I dry shave with an electric shaver now.

Fraaahnces · 07/08/2022 13:20

@RockinHorseShite - Yes, I have been in that position. It took years to get a dx but I have one now. I have a lot of empathy for the OP and genuinely believe that there is a serious issue. I have never attempted to minimize her concerns. I just think that it is impossible for anyone to accurately diagnose her if they are not qualified, haven’t seen test results or even met her.

Original poster
OliveRanch · 07/08/2022 13:22

JS87 · 07/08/2022 13:19

The way you describe the itchy legs is what o get when I shave my legs in the shower. I have come to the conclusion for me it’s the mast cells degranulation after the combination of the pressure and warm water. I dry shave with an electric shaver now.

I rarely shave my legs and certainly didn’t back then. It’s hard to describe but it was like my blood was itchy, it wasn’t my skin.

OP posts:
Hermonthis · 07/08/2022 14:44

Nobody has ever asked me if I had glandular fever! (I haven’t had it) And I had no idea there was a link to MS.

Really interesting!

Original poster
OliveRanch · 07/08/2022 14:51

Hermonthis · 07/08/2022 14:44

Nobody has ever asked me if I had glandular fever! (I haven’t had it) And I had no idea there was a link to MS.

Really interesting!

You can have the Epstein Barr virus without having developed symptoms of glandular fever. It seems to be EBV that’s linked to MS rather than specifically having experienced glandular fever symptoms.

OP posts:
PastMyBestBeforeDate · 07/08/2022 15:10

Lots of people have had EBV without knowing it. I had glandular fever when I was a young teen and, yes, decades later I was diagnosed with MS.

InTheCup · 07/08/2022 15:11

It worries me because my son and I had GF. I've got MS, always worries me he will get it at some point. MS is far more severe in men (generally).

CherryBlossomAutumn · 07/08/2022 16:08

@InTheCup I don’t know if this helps, but I decided to go on the MS forums as it was looking increasingly like I had MS (but lucky for me I didn’t). Anyway, it actually gave me a lot of hope, as you have MS you will be familiar with signs but in some ways as you are more aware, you could get very early intervention if your DS ever shows signs (and I hope he doesn’t). This could make a really huge difference. Also, now they know about EBV and also with Covid it is speeding up understanding and treatment. I’m sure you probably know this already, but the rate of learning in MS seems quite hopeful.

PlatinumBrunette · 07/08/2022 19:49

Just wanted to pop on and reassure about the Epstein Barr virus and MS.

EBV has been shown to have been contracted by 90% of the world’s population.

It doesn’t always cause symptoms, particularly in the very young. So, it’s by no means a precursor to everyone who has had it, going on to develop MS, just an interesting connection that science is investigating right now.

peridito · 07/08/2022 19:59

This is an interesting listen re MS and viruses ,

www.bbc.co.uk/programmes/m00154bt

Original poster
OliveRanch · 07/08/2022 20:25

@peridito that was fascinating, thank you for sharing.

OP posts:
IrisVersicolor · 07/08/2022 21:10

PlatinumBrunette · 07/08/2022 19:49

Just wanted to pop on and reassure about the Epstein Barr virus and MS.

EBV has been shown to have been contracted by 90% of the world’s population.

It doesn’t always cause symptoms, particularly in the very young. So, it’s by no means a precursor to everyone who has had it, going on to develop MS, just an interesting connection that science is investigating right now.

The concern is OP’s neurological symptoms not a putative link specifically.

Bloodyel · 08/08/2022 16:40

I posted earlier in the thread about a fork of coeliac disease that specifically affects the nervous system (gluten ataxia) and I've seen OP's update about bowel movements and mine were exactly the same, coinciding with my menstrual cycle too. It could still be many other thongs but just wanted to add that as I was also screened for coeliac on a blood test that ame back normal but cutting out gluten was the only thing that cleared up my many dofficult neurological symptoms.

Bloodyel · 08/08/2022 16:40

*a form not a fork lol

Original poster
OliveRanch · 09/08/2022 18:16

My blood test results have come back with an abnormality which I think might be a clue to why I feel so awful, although I’m not sure it would explain what happened on Thursday/Friday. I haven’t spoken to the doctor yet.

My transferrin level is 2.1 g/L [2.0 - 3.6] and my serum transferrin saturation is 56% [25.0 - 45.0] which I understand to mean I have iron overload. I have BetterYou 5 mg iron spray but I only use this very occasionally, maybe once or twice a month and don’t take multivitamins. I also very rarely eat meat so it’s not what I was expecting at all.

Hopefully the doctor will contact me at some point to discuss it. I’m so confused.

OP posts: