Pernicious Anaemia Society
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Update

Ill do my best not to repeat myself from a prior post and bore you all but without a little repition theyll be no context to the update, so here goes my best attempt at an update with minimal waffle and going off on tangents ... so prepare for waffle and tangents i suppose. But ive attempted to break it up into sections

SOME FOGGY BACKGROUND INFO THAT MAY BE A LITTLE CONFUSING AS I FORGET ALOT MYSELF

Ive been PA from birth (most likley be a stomache operation may be other stuff maybe both, alot of my older records are apparently hard to find from birth, i asked GP here, tjey said call original hospital called the hospial and said may be lost but oh well)

To the best of my knollege my jabs started yearly then one every 6 months then 3 month now its every 2 months but Drs and nurses push me to go longer without it as its *dangerous* despite many docotors notes from old doctors (looking through records of past 5 years or so it also looks like the amount injected each time was lowered in past 2 years or so)

Ive always had the following symptoms and ive been told by many NHS people it doesnt work like that and there all imagined

Burning bones (cant think of a better description sorry)

IBS ( a tad vulgar but i literally cannot renember a point in my life deficating normally )

Electric *shoots* up spine arms and legs

Pins and needles

Shaking/tremors mostly hands and legs

wieght issues (average wieght is between 6 - 8 stone, never made it above but constantly trying Dr always said i should be around 10ish )

Fatigue and tierdness sleep doesnt help

Bleeding gums

Very wierd and horrid feeling feet

A terrible memory (not just names , my own name, going to house i dont live at, kettles in fridge, no time perception asking same thing again and again, directions..

Theres probably more but you the idea, ive written this out 3 times now and each time my phone has died, the explorer has crashed or somthing along those lines has occured.

in the past year to 2 years my condition has got worse, the general symptoms i listed (and probably a few more but im lazy after a few phone crashes) and i started to get

chest/ heart pain

alot of breathlessness

Walking became very hard

Weakness... but ridiculous weakness, as in opening doors or draws is often near impossible and i need help

Getting dressed is confusing and hard

The scariest bit obviously being the heart and chest pain then the breathing difficulty

(I just deleted a big rant about the drs looking into issues with the chest pain cancelimg specialists and general treatment and so on... this is meant to be an update not a rant haha)

Long story short all this progressed into me needing crutch to get around... and take forever doing so, them a wheelchair and a friend to push it as i was just so weak, i barley slept as pain kept me awake

I had ti quit my job (its hard to make 100 kilos of fudge a day by hand, dance entertain and do the odd media thing and make people laugh while like this, work was very helpful and understanding but yeah there is a limit that and they didnt want me to die ... in a bit of a work addict)

I went to france and saw doctors there (gave up on NHS ) basicly woumd up being given a higher dose of B12, noticed all the normal things that improved with it did but more so (expected that though) but also my chest and heart pain changed to a horrid discomfort, it still kept me awake at night from generally being so unpleasent but it was definitley better than the pain

After some help from the WONDERFUL people on here and a few more chats with french doctor i started daily loading doses to see what would happen

WHATS HAPPENING NOW

After maybe 3 or more days loading doses the following started to happen and has been slowly improving since some quicker or more than others but i cant accuratley say...id be more accurate with timespans but im literally geussing most of this, i only started keeping a diary of it a few days ago as i did t think theyd be such a big diffence

I can walk normally again!! Not very far, but its with no crutch!! And no chair just breaks :)

All chest and heart pain has gone, as well as the discomfort that replaced it (this was slower to happen but once it did seems to be getting better alot quicker than the walking issues )

Breathlessness has gone, but i do still do this wierd gulping gasping for breath deep breath thing, like an attempt to regulate air... its a hard thimg to describe...but its much less concerning

Tremors and shakes improved ALOT, i still get leg tremors somtimes and my face twitches but barley at all, i can hold my hand infront of me and it doesnt move at all ! I know it doesnt sound impressive but that makes me so happy!

Its vulgar i know but solid stool! Im not joking when i say i dont renember ever doing that in my life... now its not all the time but its good most days

After a few days stopped feeling *high* and from it and started to platou more amd more or at least feel more normal and good all the time rather than super up or super down

No electric *shoots* in back or arms BUT it does happen in my legs

i do sleep now anywere from 8 to on a few occasions 16 hours but rest will help i geuss

My vision is sugnificantly better, which i didnt even realize was an issue, colours are brighter everythings sharper clearer and things stop bluring up / going in and out of focus when i read...

I dont know if this ones vision or mood but people look happier, before everyone looked kind of pale, gaunt white and upset or angry, now most people seem happy normal and have alot more colour and expression to them

My gums dont seem to bleed as much but that varied a bit anyway

Im generally alot more focused, able to pay attention and not start staring at walls and so on

My memory is still abysmal for names tome perception and generaly silly things like ... erm most recent one was making coffee and tea for everyone and one wound up in the fridge freezer thing etc but old memories SEEM to be returning, as in im renembering stuff from childhood or school and most of those (well basicaly all)have been completley gone for a long time

I DO still get burning bones, that hasent seemed to be effected much yet, i think its a little less, but not much

In the past day i have felt the 2 stabs of pain in my chest but its very very mild.

I havent noticed this myself but apparently my skin colour has changed to a better one

Theres probably more to add but right now without my diary thats all i can think off and i suppose there the main changes that ive noticed , i think i have 3 or 4 more days of loading jabs left (again im not sure, i have a wonderful fiance whos put up with me during all this and keeps me on track reminding me of all the things i need to do and when to do injections , whate day it is and so on... i hope soon ill be less of a burden as this improves and maybe my memory will get better)

after the loading jabs im going a month without an injection ,to see how quickly if at all symptoms arise, during which time we are

Leaving the UK (mostly for quicker cheaper better medical care)

doing a CT scan (im told cancer can be a bigger risk woth PA, i know alot of things seem to be getting alot better very fast but it could be masking other problems and id rather be certain )

seeing a heart specialist (PA can make heart work harder ? and i do have a plated heart duct valve too) and maybe a nerologist while having doctors look into how regular i may need the injections and at what dose ...

its far too early to make any proper judgements on my health, im aware i sound estatic but thats just joy of not being crippled and in a horrid painful place anymore, im well aware theres probably more bad to come

Sorry if all that was a bit long winded, writing stuff down helps me renember, your feedback helps and hey maybe theres others that have gone through or are going through simlar and this may help them At least feel better... its early days for me in terms of recovering from Whatevers been happening and not all the facts are in at all so it may not be related to PA , im no doctor

Ooo on that note i have a foggy memory that returned a day or two ago of one uk nurse telling me any more than 1 injection every 8 weeks could wind up giving me cancer... i strongly suspected fibs but any vadility to what she said? Because thats super scary!

Gambit (sorry id dont renember your full username but your great!) explained somthimg about hypertentesion from a ridiculously huge dose over 30 minutes can cause problems i think but yeah... were is the cancer thing coming from? (Just to be clear gambit never suggested to me it can cause cancer)

Oh and clivealive im new but the few posts ive seen if yours always seem a smile on my face maybe its just because i can renember your name because it ryhmes... -no offense - either way your awesome!

And one more time.sorry if ive done alot of repeating or rambling and tangents.. or made no sense and contradicted myself..i did try not too, i get mixed up alot and its normaly the lovley lady of my life who helps me renember stuff...not that i dont try to

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Dear fudgemanjim, your story is really so apalling . Your have my sympathy . Have you never been tested for Pernicious Anaemia ? This test is a very unreliable one, but I’m shocked if you haven’t been given it . Your symptoms are very indicative of PA. But you do know , don’t you that B12 is NOT toxic (my GP told me that it was also ) I have had to resort to self-injecting because I could only get one injection in 3months , even after a confirmed PA test . I am left with a few symptoms, but now that I self inject , I am a different person . If you find you need to go down the S.I. route , you will get advice here on how to obtain the necessaries . I need one injection every week, if buying in bulk ( 100 of everything at a time ) it only costs £1.00 per injection . Also pay great attention to a good diet . And get plenty of folate/folic acid ( B9)because it works in tandem with B12 . Gut issues can be helped by eating fermented food e.g Organic RAW sauerkraut , cheapest if you make it yourself with red organic cabbage . PA patients have low/no stomach acid and this upsets the stomach flora . I used Symprove at first which is marvellous but expensive . Some people use probiotic capsules . There are some marvellous advisors on this forum who will no doubt get in touch with you . I’m not one of them but I wish you the very best I’m getting your Health back .

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Hi,

Great to hear your symptoms are improving. I hope that continues.

"ive been told by many NHS people it doesnt work like that and there all imagined"

The symptoms you describe read like typical symptoms of PA and B12 deficiency. Quite a few on this forum are labelled as hypochondriacs and psychosomatics.

"I DO still get burning bones"

Have your Vitamin D levels been checked?

"one uk nurse telling me any more than 1 injection every 8 weeks could wind up giving me cancer"

stichtingb12tekort.nl/weten...

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there was at least one study in scandinavia that showed that people who were being treated with B12 shots had higher rates of cancer and larger tumours but this was only showing a correlation it wasn't showing a causal link and no causal link has ever been demonstrated.

There is a causal link between low B12 and cancer because of the part that B12 plays in replication of DNA (I think) but it is quite a small change in the risks. The problems that cause PA - can also raise the risk of abnormal growths in the stomach - but again its a very small increase.

Think that the causal link between treatment and higher rates of cancer is more likely to be the fact that the patients will have been B12 deficient before starting treatment and developed the cancer or pre-cancer then. The larger tumours probably are related to B12 as it will promote the growth of all cells but it isn't proven that it was B12 that was the initial cause of the tumours. The last article that Sleepbunny references actually refers to treatment of particular tumours with B12 before chemotherapy was available - so it obviously doesn't make all tumours larger.

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difference between a correlation and a causal link

taller people have larger feet - that's a correlation, not a causal link. Stretching yourself on a rack to make yourself taller isn't going to change the size of your feet.

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Hi Fudgemanjim in all that "waffle" above I saw no mention of Maple Syrup or your Folate level and as for fudge - much as I love it - with my diabetes that's a No No! I had a most beautiful cat named Fudge for 15 years - gone now :(

As to your Folate - do you supplement with folic acid at all as I guess that having gastric surgery (like me at the age of 17) you may have absorption problems and may not get enough from your "greens"?

I can also empathize with you about the difficulty of getting hold of your medical records even though I've been with my current doctor's practice for nearly 52 years my partial gastrectomy was done in a Birmingham hospital 7 years before I moved down to where I am now, and although they've "looked" my practice has no trace of them.

As to having B12 injections can cause cancer, in 46 years I've had more than 600 of them so either I must be riddled with cancer or your nurse was talking rubbish - I suspect the latter. It is postulated that P.A. may increase the risk of stomach cancer by a very small percentage but as I had two thirds of my stomach removed maybe there's not enough left for the cancer to find.... :)

On a sad note, the doctor who "struggled" for at least four years to find out what was wrong with me (I was successively treated with Tofranil, Valium and Librium for depression, hypertension and Neutradonna for indigestion) when she eventually got the P.A. diagnosis confirmed in 1972 after two "Schilling's tests" she told me that I had only "two years to live" - unless - I had B12 injections every four weeks for the rest of my life. Well, sadly Doctor (Dame) Rosemary Wool D.B. died last month and I attended her funeral service. I will always love her for her tenacity in not "giving up" on both myself and my late wife Valerie who had heart problems at the same time and died whilst undergoing surgery 25 years ago. They are both "gone" now but I'm still "clivealive" and over 75.

Seriously though I'm pleased that you are making progress, hope that it may long continue and I wish you well.

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Thanks for all your responses, more sleep will occur soon but seeong as an adorable puppy owned by the friend giving me a place to stay since getting sicker just burst in the room for morning hugs so i figured id respond a bit now.... hes so fluffy!!

I dont renember if there were tests due to being from birth / 1 month in (i was premature and all the operations amd sonon meant first 3 or 4 years of life was no leaving hospitsal) and anything before 15 years old i struggke to renember... i was on very very regular doctor visits like this one special doctor who was with me from birth amd did fundraisers for me and so on, sadly i heard hes passed on now...but im definitley registered as PA, theres no arguements there with drs, they know, i assume they must have done these tests amd its all in *lost* records etc

I always kind of thought b12 wasent toxic, ive got 5 doctors notes from 5 diffrent doctors (well 4 regular doctors/specialists and one phyciatrist from when they thought i was bipolar, -after many years and antiphycotics of just eughness the phyc was certian it was my b12 and not bipolar though- saying ican have "when symptoms show" no matter when that is, but of course the new area ive been living in for ... well a long time always have the same response no matter which doctor it is (or nurse) and that responde is the symptoms arent real (i think maybe they see bipolar and and assume im imagining) and the most common is "we dont work that way, says 8 weeks anything more is ridiculous/dangerous" ignoring the doctor notes...sometimes even telling me to eat more meat for b12 (Rarer but some of them do..Also shows a profound lack of knolledge on PA or to me as i cant absorb through meat, i had a fear of needles for ages, if diet would fix it i think id have chosen that as a kid.. and im a steak addict i think) in reality i think maybe there just worried about being sued for malpractice if they give the jab and i gets me ill... its the only explanation i can think off because i got 6 month supply for 2 euro via partners Dr friends abroad so it cant be cost... still youd think 5 doctors notes would put those fears to rest :(

I am supplementing folic acid, in tablet form, im not sure if i need or if my body can absorb it in tablet form as ive never done via tablet before, maybe it was mixed in my jab,,,my mum always used to make me eat plate of greens for breakfast... i fact i still do, because she said i needed to with my condition...but whatever the case, everything seems to be making a massive difference now anyway so that is good... as i said i just dont trust any of my doctors or nurses here now or what they say, also not worth how some of them treat you just for asking stuff... so ill do what i can here (which is doing far more than the doctors have managed in past 2 years... on that note my first nhs chest specialist is in line 60 days now, after 2 cancelled by them ones over past yearish due to no space or somthing.. of course in that time weve discovered thats the wrong kind of specialist anyway as we saw a top chest but not heart specialist abroad who ... well to go into what he said is a whole other post really amd irrelivant) and wait on results and tests from french Doctors and do as they say once weve moved (not long now, and a shame because i used to be such a big supporter of NHS as they did so much for me as a child and saved my life many times, i still cant thank them enough for that even if now there a bit bad, well in this instance anyway, they take exclent care of my nan up north, i know im complaining a bit, but they are free and they do do alot for people, so i cant fault them really)

They havent tested my levels of b12 or anything like that in a while, 3 years maybe... and when they did, there was just alot of condesention and..maybe thats when they lowered my b12amount ... cant be sure

Sleepy bunny I dont think ive ever had my vitman D levels checked, ill ask about it to abroad drs as unless its emergency i do not plan to visit my doctors here now as theyve been no help and im not here much longer anyway... if the burning bones is a vitmain D thing ive had burning bones all my life so i assume the damage is done, i know literally nothing of vitman D though, but thanks because getting rid of the burning bones would be the icing on the cake!

Gambit thank you for clearing up the cancer thing, along with the other users who posted too (im on my phone so its hard to scroll to check names alot without tapping somthing and closing the page) still worries me a smidge but i geuss its somthing we all worry about,

clivealive so sorry to hear about your late wife and passing of your very good sounding doctor, on the happy side you did make me chuckle with the not enough stomach for cancer to find xD as for the fudge, yes its mostly sugar, and oddly maple fudge was one of my favoites to make and melt in coffee ir hot choccy... i did make a few sugar free alternitives for a while but to be honest its not as good texturewise and i dont trust all the sugar free alternitves put into them, daibetics should stay well away from the stuff sadly ( since i made it for bigger names i wont mention, everyone in my family besides me and mum have become diabetic... they did eat it all the time though :O) oo and we didnt have a cat called fudge but there was a dog called fudge that used to visit the shop :O

I think i responded to everything, Thank you for your input and support

I will be on here again but wierdly i just had a message from the service provider here saying this website is blocked due to illegal discussion of drugs/sex/terrorisim (well not those exact words but yeah...roughly that....i know that cant be right) so its on mobile internet now, ... unless theres some very strange b12 fetish going round :S

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