What's your weirdest PA symptom? - Pernicious Anaemi...

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What's your weirdest PA symptom?

Emmers5
Emmers5
35 Replies

Reading other people's stories has been so helpful and gives me such hope. Really appreciate all the sharing. I've also been enlightened about symptoms that I didn't know were symptoms. I'm trying to find some humor in this now. My weird symptoms include the sensation that we were having an earthquake. I kept asking my family if they felt it but the foolish people didn't. Another of my weird symptoms was my lack of oxygen would cause me to feel like I was going to die if someone hugged me too long. I thought isn't it odd that you don't hear about people dying from hugs? It must happen all the time but you just don't hear about it.

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MontyW

My strangest symptoms involved a lack of feeling in both legs. Let me try and explain. I would be sat there feeling quite tired and it felt as though my legs were not there or were levitating. It felt as though I had no toes, feet or legs. It felt as though I could put a six inch nail into my thigh and I would not feel it, but it was not just about being numb, as it felt as though I had to concentrate and tell my brain that I had legs and I needed to move them. Hard to describe but the most strange sensation.

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Nackapan

Being thrown back on the bed was very strange. Head leading then having to sleep suddenly. Like a force.

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Nackapan

Si fkD ti hear after you'd long 2 years you have physically recovered. I drive a short distance to a shop to buy a bed sheet. Big deal for me to go in a shop. Hat dark gkasses ect.

The shop was no longer there. Been gone a year the passer by told me.

Felt so odd . Like you say lost time.

Feel like I'm slowly waking up. Hope you can enjoy life again soon.

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Emmers5
Emmers5
in reply to Nackapan

I understand the feeling of waking up. Not sure what happened those past ten years or so. I'm better, not well. Just thought we could all use a laugh at the tragedy.

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Nackapan
Nackapan
in reply to Emmers5

Yes laughing close to crying.

Good idea

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Sleepybunny

Hi,

I don't have a confirmed diagnosis of PA but believe majority of my symptoms are/were due to b12 deficiency; most have improved or disappeared on B12 treatment.

Weird ones included

1) Feeling like insects were crawling all over me (search online for formication)

2) Daft behaviour such as boiling the kettle without any water in it, putting my keys in the fridge

3) Falling off the pavement when someone walked directly towards me (search for proprioception problems)

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Fudgemanjim

love the kettle in and fridge thing....ive been known to do a simlar but not quite the same thing....boil the kettle put it in the fridge.... then sit back down like id made the coffee etc apparently a fair few times ive done this xD .... another funny one would be being asked to get somthing many times like & minuite same room walk away .... and returning with nothing???? most recently and apple for my wifes dad.... 8 times returning with nothing but not quite realizing, just standing infront of her dad with my hand out until he reminds me again....in the end my wife got him the apple

xD

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deniseinmilden

I'd tell you if I could remember...

Oh, that's it - memory loss!!

😜

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WildMarmot

My weirdest symptom is the sensation of cold water dribbling out the corners of my mouth and down my face!

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Litatamon

Wow. That is so interesting. Did you share that with your GP? Curious. And nosy! Smiling.

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WildMarmot

I didn't share with my GP, but I will be seeing a hematologist later this month and plan to let him know.

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Sleepybunny

Interesting, I used to get the sensation of cold water trickling down my spine.

Did tell GPs and neurologists about this one but no interest at all from any of them.

I suspect it was a warning that my spine was starting to suffer nerve damage. Still comes back if I go too long without B12.

I have some very strange visual migraine symptoms including visual snow (TV static in my vision) and suspect the migraine process was triggered by B12 deficiency.

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WildMarmot

Interesting...I suspect it must be from nerve damage as well.

I also get visual migraine symptoms. I think what I have is called an ocular migraine. It doesn't hurt but I can't see for a few hours, there is distortion and a sort of rainbow prism blocking my vision.

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fbirder
fbirder
in reply to WildMarmot

I've been getting those migraines since I was 23 (almost 40 years ago). It starts with an almost imperceptible flaw in my vision - like a pixel on an LCD screen that has a small drop of water on it.

From there a multi-coloured zig-zag grows out in a curve. Inside the curve it feels like everything is just grey, but I can still see things. At the same time my brain stops working and I cannot put words into a coherent sentence.

Strangely enough, I can still drive OK!

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WildMarmot
WildMarmot
in reply to fbirder

Yes, exactly! And I get the same thing with being unable to form sentences. I can't remember words when it happens. I can drive as well, as long as the zig zag disco doesn't block my entire visual field.

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Sleepybunny

"a sort of rainbow prism blocking my vision. "

Think the name for that might be a scintillating scotoma.

en.wikipedia.org/wiki/Scint...

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WildMarmot

I never know it had a name, but yes! That looks to be what it is

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spacey1
spacey1
in reply to Sleepybunny

I had the feeling of warm water running over my foot. It wasnt unpleasant, but very odd!

Now I get a sensation of water in my ears when I need to top up with b12. Like when you've been swimming, but with no actual water involved 🙄

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Retteacher

How long do your visual symptoms last and do they affect both eyes together? I have binocular disturbances with blurred vision for 5 to 10 minutes only. I first thought that I was going blind. I have no associated headaches and my 'stroke' Consultant deemed these episodes 'silent migraines' and of no significance. In the USA they are not so sure. They only began two years ago and I hadn't made the connection to my as yet undiagnosed B12 disorder (both parents had PA).

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Sleepybunny

Hi,

The visual snow is permanent. I also get occasional scintillating scotomas but only in one eye at a time and they last up to an hour.

What does your optician think? B12 deficiency can affect the optic nerve.

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Litatamon

*scrubbing my feet near my toes - since have learned that discoloration in that area is connected to b12 deficiency. Scrubbing! Laughing.

*acting completely casual with "Hey the bottom of my legs look greyish!" How absurd to think it is so normal!

*thinking it is so strange that I keep breaking out at the corners of my mouth and nowhere else. Since have found that rashes/cracking around corners of mouth have been documented as well. The things your mind tells you over and over with hints that this all makes no sense!

This one seems scary but I was in complete control of it, so to speak ---

*out biking - loving life. Happy on my bike. Gorgeous lake all around me. Felt a massive pull - a real physical pull - to bike into the lake as I rounded the corner. Literally saw myself riding into the lake and the vision wasn't sad - just "was". Thankfully I accepted it, although taken aback as nothing has ever occurred like that before and I wasn't depressed. Later learned hallucinations/delusions are linked to b12 deficiency. Thankfully I had someone with me and could be vulnerable enough just to say it!

*taking beans out of my diet. Thinking that they were causing some of my issues (before diagnosis) Bad beans! Oh the number of hours wasted on food eliminations.

*I often knew when the worst symptoms were coming (not knowing I was deficient in b12 or symptoms linked. And thought cycling symptoms meant hormonal). I would feel this very intense "pull" in my body, coupled with dryness, even if I had tons of water and was not dehydrated that way. My shot is scheduled today and have been suddenly feeling that pull for two days. Things that make you go hmmm.

*Casually asking a loved one if their CNN tickers - a la cable issue -were coming off doubled too. Umm ridiculous behaviour!

*Asking others if they felt that shock. Answer was always NOPE. Quelle surprise!

*spending way too many hours trying to fix my neck that can't turn properly and arm that continually hurts and can't raise well. Must be my biking. Not carrying things on a certain side as that brought on pain. Both disappeared within two shots. After being an issue for six months to a year. Buying new pillows, researching osteopaths, chiropractors, therapists. Trying every exercise to loosen it all up. Oh the hours spent and wasted on my neck, shoulder and arm. B12 shots given - it all but disappeared.

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15beansoup

thinking someone was breaking into my home everyday robbing me because I couldn't remember putting something in a strange place. Thinking my cheese was poison on my sandwich, seeing everything on walls sideways, parking my car sideways in the slot, thinking pencils were bananas, thinking my Dr.s office was a KFC drive-thru, thinking I was on a carnival ride at the grocery store, Thinking everyone around me was crazy, Thinking y window fan was a UFO I could go on all day lol

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Emmers5
Emmers5
in reply to 15beansoup

These are my favorite symptoms yet!!!!

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F1lligree

I have nothing as exciting, but can relate to a lot of those; this is a fascinating thread. I'd never considered that the overwhelming urge to do things that make no sense was a symptom.

Feeling like I'm in a glass box and my body is outside it where I can't contact or control it; accidentally spilling hot water on myself while making tea and having to remind myself that it should hurt; being freezing cold and then boiling hot without any obvious reason.

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Cherylclaire
CherylclaireForum Support

My strangest was to do with sense of smell:

I was about to go into a local supermarket and when I opened the door, was hit by the overpowering smell of sewage. Backed away in horror and told partner, who obviously could not smell anything amiss.

Tried again; opened the door and faced the same revolting smell. Had to get out again.

Partner, having promised to buy only tinned items (!), commented that no-one else seemed to be affected- at which point, a Chinese woman left the shop with a face-mask on.

I used this as evidence that the shop must have a serious sewage backflow problem.

It all made perfect sense to me at the time .

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Zebra20

My weirdest symptom is actually the opposite: after loading doses, the lack of labido I’d had for a good decade, went away!!! Thought antidepressants, or age accounted for it but now that I’m on B12 I’m just fine! Really a surprise to me, and haven’t dared mention to anyone but this forum. 😊

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Saoirse2016

Hearing noises in my head (separate from tinnitus)

Quite a lot of times I'll hear something like a shotgun going off (KA-BLAM!!) when I lie down in bed. Scared the bejaysus out of me the first time it happened, now I just shrug it off!

Then on other occasions I'll be asleep and get woken up by a loud ZZZIIIIIIIIPPPPP! noise that's accompanied by an electric shock sensation.

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Emmers5
Emmers5
in reply to Saoirse2016

I used to hear my babies (now 21-24 years old) crying when they were asleep. Couldn't get the sound out of my head. Wonder if my PA goes back that far?

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Saoirse2016
Saoirse2016
in reply to Emmers5

I think my PA (not that I've been diagnosed yet) goes back decades, I've had the symptoms of it since I was a teenager

Earlier on this year I kept thinking I could hear the ringtone on my mobile, but it was just the noises in my ears/head, got to the point where if my phone did ring I'd ignore it!

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Emmers5

I didn't realize my fingertips were numb, I just thought my nail polish was way too heavy.

I hallucinated the odor of burnt toast and gave my family many lessons on working the toaster oven. My sons constantly blamed each other for burning toast or I might have figured it out sooner.

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Emmers5

You all are making me feel so much better!!!!!

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CatrionaNason

The lack of oxygen is something I too experience.

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Sleepybunny

Hi,

Another one I remember when I was at my worst was waking up in the morning and finding that my hands were like claws which took an hour or so to wear off. Thankfully this symptom disappeared when I finally started B12 treatment.

My jaw muscles were so weak and painful that I could only clean my teeth if I supported my jaw with my hands; I also had pins and needles in my teeth which felt very strange.

I became hypersensitive to some sounds and in particular whistling so if you ever meet me whatever you do don't whistle next to me.

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Emmers5
Emmers5
in reply to Sleepybunny

Oh my! I do remember waking up with claws! When I was at my worst, lying in bed, the weight of my limbs felt like they would dislocate my joints.

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BirdlessBox

Yes, I have had both those. I think since B12 injection I can expand my lungs better- before they just wouldn't - but think my iron/folate might be low as I still feel short of oxygen. The clumsiness is annoying. Stabbing pains in the eyeball was not much fun.

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