PA Symptoms

[Emmers5]

Does anyone have an exhaustive list of possible symptoms? I keep discovering things that I didn't know were PA related. At some point I saw a list of 100 symptoms but I can't find it again and even that didn't include everything.

[Alfabeta]

Go on the b12d site - it’s run by an elderly Anglo indian doctor - the list of symptoms run into the 100s.

You may not have PA but simply b12d - I acquired mine by being close to vegan in diet and my doctor putting me on Omaprezole with recurring prescriptions for over 6 years.

[fbirder]

Here is a non-fanciful list of symptoms. pernicious-anaemia-society....

Some sites will list anything and everything that anybody who has ever had a deficiency has ever had.

[Cherylclaire Forum Support]

The list that GPs recognise as being related to B12 deficiency are likely to be a lot shorter than those written by people who have actually experienced B12 deficiency (for whatever reason: PA/ non-PA.

Most are still waiting for a definitive diagnosis and most of those will wait a number of years.

So, for those who have nothing better to do but wait, here is a list of those that I have experienced, starting from the top:

Hair loss and blurred vision, tinnitus, dizziness, overlapping unfinished yawns (air-hunger)

Brain : cognitive issues (not understanding what people are trying to tell me), sensory overload: too much noise, brightlight, unexpected movement, talking vs others talking/ radio/ TV. Memory: losing words mostly nouns, forgetting what has happened (usually short-term) and feeling like bloodrush, sinus problems: face pain, mood-swings,

irritability and impatience, and of course exhaustion and a lot of sleeping and fogginess.

Gums bleeding, teeth getting loose, losing teeth, jaw pain

Salivary gland and salivary duct infection

Smell: sense of smell going wrong : smelling aromas I know to be false

Loss of muscle, tired legs and arms. shaking, having to tell my legs to move, numbness

and tingling, inability to stand for long periods

Daily diarrhoea and abdominal pain

Groin and back pain

Stiff and aching feet especially in the morning...………….

and perhaps unsurprisingly, a craving for solitude !

Days off from people: this is the hard one at this time of year, and the one that is least understood by loved ones. GPs also likely to view this as depression. I look on it as an opportunity to recoup. No offense intended - but plenty taken !

Not all of these will have you nodding or smiling, and not all of these will be permanent anyway. Some have a lot worse than this to cope with, I know.

For some, Christmas is difficult without being in touch with someone who knows how this feels.

Just saying, you aren't alone, and you don't have to pretend here. That's why this forum is vital. Especially at Christmas when so much is expected of you.

[Heidiv]

Thank you CherylClaire, it's true nobody but the people in this group can understand how hard the "holidays" can be for us. I recognize almost all of the cognitive issues: overstimulation in a group when a lot of people are talking to each other, very exhausting. Then with all the problems we have getting together is always hard, if it's not our sinusses or muscle pain that are bothering us then it's the so called "IBS". And even if you try to explain even people close to you can't understand. It's important to know we're not alone in this.

[Cherylclaire Forum Support]

I think you were referring to "100 Symptoms of Vitamin B12 Deficiency Anaemia" by Vita Sciences - the first sentence of which reads "This is a complete list of all possible symptoms of vitamin B12 deficiency." -Quite a claim !

I did however find this list really useful. It even had olfactory hallucinations- where you notice odd smells that no-one else does (and that usually, looking back, make no sense at all).. so obviously effort has been made to include everything. This one is not generally recognised, probably because not many of us would want to tell their GP about that !

[fbirder in reply to Cherylclaire]

I've had those ever since I can remember. I thought it was normal and that everybody did it until I was about twelve.

[Emmers5]

Thank you for all of your replies. I so appreciate this forum; it's true that nobody else really understands. I look normal to those around me so they just don't get it. My symptoms are mostly resolved, thanks to weekly injections. But every time I think I'm well I find another symptom that I thought was normal.

Here are the ones I didn't realize were PA related:

feeling sharp stabs as if someone was sticking a pin in me

feeling of tiny wet spot on leg

feeling of something stuck in throat

hallucinations of: earthquake, burnt toast, four letter words

couldn't remember first names of people I knew well

legs too heavy to lift

my electric toothbrush makes me so dizzy I almost fall down

anxiety, nervousness in social situations, paranoia, insecurity (or maybe i'm imagining this)

[Benji76]

Emmers5, Cheryl Claire and Heidi V thanks for sharing! So much of this chimed with me. The thing is you get used to these things sometimes and you forget that they are not normal. Also, when you look at a symptoms list there’s nothing to bring it alive for you quite as well as someone describing it. Truth is, I was just scrolling through here thinking “I don’t know. Do I need to self inject again? Would I call this a symptom? Is this fatigue and muscle pain just understandable? What is it with my electric toothbrush anyway?...” I have to laugh at myself sometimes. I suppose our symptoms can always be caused by something else - a sinus infection, perhaps. Chances are that won’t be true for all of them though. And we might forget that conversation we apparently had yesterday, but we all remember quite well, I suspect, when it all started going wrong and the progression of symptoms we experienced. No need to doubt yourself. PA is not exactly the same for everyone. The neurological system is full of surprises.

[Emmers5 in reply to Benji76]

Thank you for your reply. Where it started going wrong...

That is one of the things that I can't figure out exactly, and that bothers me to no end. Maybe that's one of the reasons I seem fixed on figuring out what is and is not a symptom? Diagnosed two years ago, severe neurological symptoms started at least two years before that, physical symptoms maybe 5-15 years before that. I'd really like to know when I stopped really being myself so I can figure out when I have returned to my normal self, what is my fault and what is PA's fault

[Benji76]

I’m sorry if I sounded flippant. Many of us struggle with these questions. Actually, I’m not sure of the moment PA got started with me, though I have some suspicions, I will never know for sure. The neuro stuff is especially hard to deal with. I can describe a protracted journey through an ever increasing symptom list over the course of many years. Still no diagnosis, but they give me b12... I feel your frustrations. Learning to live with this, and whoever we are as a result, is hard. In spite of that there are many on here who have so many encouraging and positive stories to share. I try to hold onto that. Big love to you.

[Cherylclaire Forum Support]

Emmers5 - I have felt at times that accepting limitations is disloyal to "Old Self"- that somewhere deep inside, there is the old you waiting for the deficient you to get your act together and find the right research or the right consultant or even just ask for the right test. Trouble with this is that it leaves you in the waiting room.

Trying to find a balance is difficult especially when improvements are slow and not without inexplicable setbacks. Never knowing whether you will wake up to a good day or a bad day, or even whether the good/bad day will stay that way for 24 hours makes planning awkward.

I think aim for hopeful pragmatism: don't give up on the possibility of recoupment but don't waste the present solely on searching. Do small things that make you happy as often as you can. Avoid for now making promises regarding long-term goals, timeframes, deadlines and routines where possible - even if that's only achievable in your free time. Break down tasks and give yourself rest-breaks. I even used to have to change the bedlinen in stages - still do sometimes out of habit !

What helps most is helping the people around you to understand- so that all the explaining doesn't have to be done when you are at a low point and feeling guilty about letting loved ones or work colleagues down. They will learn to read some of the signs.

I gave up looking for the moment it all went wrong: I was telling one of my work colleagues that I'd just discovered that my sore mouth was a B12-deficiency symptom (angular cheilitis) and he blurted in surprise "....But you've always had that !" Well, I wouldn't say always exactly, but I'd worked with him for over 12 years at that point.

It certainly made me realise quite how long it takes to get ill enough to know for sure that something's wrong- sure enough to go to a GP. If the same might be true in reverse, you can see why "hopeful pragmatism" might be the answer.

What is or is not a symptom may not be discernible until some of the symptoms start getting better or going completely. Once I realised this, I kept daily records. Sometimes, I have forgotten symptoms that I once had until someone else here posts about one. It reminds me that I am still making progress.

Of course this is different for all of us. Many people respond well to treatment and get their life back on track quite quickly. These are the ones you don't hear from so much on the forum; I'm hoping it's because they are all way too busy !

[Emmers5 in reply to Cherylclaire]

Thanks for the wisdom. It is so helpful to hear from others.