Please exuse my grammer and spelling, im not feeling overly wonderful...
Hi, im new here so im probably missing a whole lot of infomation but
Ive been PA since an operation at Birth,I just had to quit my employment due to a combination of symptoms - generally being to fatieged and breathing issues-
Ive had the following symptoms for most of life:
-Numbness, *burning bones/hands* electric like pulses
-Tremors/ shaking (like twitches and ones were im unware im doing it)
-Forgetfulness to point of going to wrong houses, boiled kettles in fridges and so on
-Tierdness
-Breathing difficulties that subsided around age 10
These always get worse when my injection was due, i would tell the drs i needed my jab more and it was always met with b12 doesnt work like that, more jabs are dangerous and symptoms are in your head. (Although saying that i have 5 doctors notes (one phycaitrist too) on the system saying i can have injection when symptoms show...theyve never worked except with one particular nurse, and infact im usually pushed to try and last longer without them, (every 8 weeks at the moment told try for lasting longer)
At this point About a year and 3 months ago i started to get chest pain and got diagnosed with many things until they settled on phenomia but said it was hard to diagnose and they wernt sure, they treated with antibiotics and painkillers... after 3 months or so i was weakened but better from the "phenomia"
Yet since then i still get
(Like a stabbing) general discomfort around my chest or heart and impaired breathing
Much worse fatigue, weakness confusion
I spent a alot on private chest specialists to try to solve this but apparentley everything seems fine, theres a CAT scan comming up on a few weeks but he says from symptoms and all the xrays and bloods ive had since problem started cancer is unlikley.... everyones unsure
But while seeing drs abroad we visited my partners family who got my b12 injection for me as they felt i needed it... i also had my medical documents for them to check amounts to take....
Turns out i was on half the dose i was on a few years ago (we think my mind is slightly foggy ) so they injected 1ml and nearly everything got better, vision strength opening doors was easy once more.... the chest pain is now sugnificantly less,,, and for about 6 days the chest pain stopped stabbing and changed to a dull unpleasent discomfort but definitley diffrent...like worms or dull electric wiggles... its been around 8 days now and
Weakness and confusions returning, starting to struggle a little with doors but chest pain is still at just discomfort with much rarer stabs
I never thought PA could cause any chest pain or breathing issues and ive always been told b12s effects a bit of a placebo and it doesnt effect mood so on.. i just thought i was a little crazy as pain and so on is 'imaginary'
Is it at all possible these chest pains could be PA and b12 related? Next on the list is a heart specialist , we were just very suprissed what a change a dose of b12 seemed to do especially when we had the higher dose abroad, im now considering just self medicating and just see if it helps by doing it more regularly
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Fudgemanjim
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"every 8 weeks at the moment told try for lasting longer"
Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.
In UK, people with b12 deficiency with neuro symptoms eg tingling, pins and needles, numbness, tremors, memory problems, tinnitus, balance issues etc are supposed to have a B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.
Have you ever had a set of loading jabs or were you just given jabs every 8 weeks from start of treatment? Has GP ever considered another set of loading jabs?
Some people on forum have discussed/written letters to doctors about the consequences of being under treated for B12 deficiency .
Firstly thank you to all of you for rapid response and advice
My responses may go off topic slightly focusing is hard,
Im from the UK im 28 and for loading doses im not overly sure, i spent the first 3 or 4 years of life in hospital (premature, breathing machines and so on) so i can only assume it was loading does at first, what i do know is i used to have them yearly then one every 6 month... gradually getting more.... stopping at 8 weeks per jab when i was around 15 and drs changed, unfortunatley i have very little memory of before 15 ish but im told i alwayshad pains of some sort
ive traveled a fair bit since and a few bits of medical history are missing , from since then (i did go 6 months without b12 abroad and became a complete mess and it seemed to permantly make me a bit foggier. )
Ive mentioned my symptoms to GPs before , saying about possibility of more regular jabs nearly all of them said b12 doesnt cause symptoms like i listed or if it did its from years without it etc (there have been a few good ones that wrote me dr notes saying have whenever i want but there never followed due to 'dangers' of doing to early, )
Until recently i always accepted this... until getting a larger dose of b12 abroad amd noticing the effect on my symptoms and some of the girlfriends family whom wprk in medicone suggested otherwise
since the chest pain its been called phenomia, a warped rib in my chest (but pain moves round chest and other drs disagree) 2 referals to a specialist one was cancelled after 4 months waiting it took many months of diffrent gps a d pushing for a new referal appoinment is now for roughly 100 days from now
So ive given up on my local NHS and saying symptoms like fatiugue dizzy confusion pins and needles burning bones, tripping, fallimg ,co ordanation , strength, swollen tongue, twitches...as its dismissed as all in my mind..which it may be..but i really doubt it is as others see a diffrence even in my skin colour and told i look generally less dead
We are considering moving country just for Doctors (nearly £300 for 10 minutes with a chest specialist in my hometown in UK and €30 for 45 mins elsewhere and he did my injection) that and b12 is easily avalible in injection form o the public, I know its all free on nhs which is amazing but ive lost my job to sickness and staying at a friemds home so waiting even longer seems unwise.
Ill definitley still be doing CT scan and seeing heart specialist soon, just to be safe, even in the emergcy room and all there checks found no issue with lungs or heart, i do have a plated heart duct valve from birth so maybe im at risk there ... doctors dont seem think so though..no dr has a clue as to what chest issue can be,
b12 definitley seems too make a big change (maybe its just helping body recover from some bigger problem i geuss)
Ive not seen a neurologist yet, no ones even suggested this so maybe thatll be the next thing too look into
I have joined the PA society mentioned and started reading up a little more which is nice, again thank you there
Ive not got copies of the bloodworks yet as all of that is on nhs and they dont seem to like giving out scans info and such, ive got all my medical documents for my current nhs practice looking through them i see no details on levels of folate etc just the fact bloods were done,
Apolgies if i ramble by the way
I like the idea of shots every other day to releive symptoms (because it definitley seems too elevate alot at 8 weeks) for a short time ,
some relitives in medicine have told me pain could be nerve damage and it changes with b12 as its the nerves healing or reacting or somthing - if that could be the discomfort in lungs that changes after jab definitley doesnt feel nice at all, but far prefrable to the stabbing that was happening ...that and breathing difficulty is much better
All your responses have have helped, i fear i may have missed a few things asked that im sure ill notice once this is posted amd my appologies in advance for that, and no offence to NHS whove helped me alot as well especially in my youth its take me most of the day to write this out ... and its probably a bit jumbled,
Im having more inections posted to me and looking into loading doses self administration until we move and lookinto what to do next
It costs £20.00 for a year's membership and they may be able to intervene with your group of doctors on your behalf to get you the treatment you need.
I'm not a medically trained person but I've had P.A. for 46 years and know a little of what you are going through having struggled with my own "one size fits all" G.P. to get more frequent injections.
symptoms of B12 are many and various ... and to some extent depend on the individual. Breathing is a common one but not so familiar with chest pain.
sourcing and self injecting B12 is likely to be less expensive than seeing endless specialist - though I would err on the side of caution on the chest pains and just get those checked out.
People vary a lot in how frequently they need B12 and having high serum B12 doesn't necessarily mean you are okay - you really do need to go by symptoms after loading doses.
some people find they need shots on a daily basis and there is no known toxicity from B12 - in fact hydroxocobalamin is used as the treatment of choice in cases of cyanide poisoning because of the lack of toxicity - the problem is potential hypertension from injection 5g intravenously over 15 minutes (with second dose 30 minutes later if needed) - 5g is 5000x the amount you get in one injection.
Thanks, very informative my partners family who work in a few diffrent areas of medicine are thinking nerve damage may be possible but if it is theres a chance for it to heal if not to late...and how all this can apparently effect heart fuction... theyre looking into nerologist and heart people for a better opinion but in the meantime ill try to self medicate as symptoms show . my partner says i start to go noticibley downhill after around after jab so well judge dosing amount on symptoms for now....
Thank you im definitley having chest pain looked into (Drs are baffled but as i said heart specialist next and they say chest pain is offten related to heart issues, even if nothings imediatley shown... my injection definitley seems to help and change the pain to alotnof discomfort after a short while.. but want to ensure its not maski ng somthing worse and so on ...
My first jabs should be arriving soon so ill post on how things go
I think looking at your explination of doseing i should be fine, i dont forsee accidentley injecting 5000 x the dose so thats far less of a worry now
Hello Fudgemanjim. I had breathing issues and chest pain at the beginning of my B12 journey (amongst other symptoms). The chest pain sort of disappeared but get a mild form every so often. After the doctor told me he was stumped and it might by psychological, my husband did some research and I have stopped eating gluten in the past 3 months and have seen a distinct improvement in my breathing and a huge, huge improvement in my fatigue and fogginess. However, I am lucky as I'm getting my injections every 4 weeks, but with my recent improvements we are going to try 5 weekly and 6 weekly etc.
Thanks, the fiance is actually on a gluten free diet so ill give it a try, anything to try allevaite this breathing and chest issue even a little bit, all my other symptoms arent good but im used to themafter all this time ots the breathing and chest stuff only being the past year or so thats scary, so thank you this is one thing to try thats less complicated that id never think of
I've found that its all a bit of trial and error! Just make sure you try something for a reasonable time and only try one thing st a time. Best of luck! 😊
It's more difficult in my opinion to get records from UK hospitals, could involve form filling and a visit to hospital records office. If there are hospital records you want copies of, might be worth contacting hospital records office to ask about process. Should be contact details for records office on local NHS website for your area of UK.
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