Diagnosed today told nothing

[Xxholly01xx]

I have suffered with pins n needles in my hands n feet for 4 years I've been getting weaker over the years have joint pains for 6 years n nerve problems for 7 years and vitamin d problems for 2 years docs always said I had symptoms of ms but refused to diagnose now after feeling so tired I'd fall asleep walking I asked them to check all my bloods thinking it was low iron and my b12 was 189 all I've been told is it pernicious anaemia and I need another blood test I've read what it means on google but would it be the cause of my other problems are they typical symptoms of sufferers and how will it effect me from now someone plz help

[2Chrissie4]

I was diagnosed 9 years0ago after nearly 10 years worth of problems! Mine started with pins and needles, numbness in one leg and if stood up after sitting down my leg would give way and I'd hit my head. This went on for nearly 10 years until had an oesophagectomy and the rest of my stomach was made into a new oesophagus. The surgeon told me that looking at my records, i had Pernicious Anaemia for years and not had any treatment! After that I had no choice but start an immediate course of B12 injections and have an injection every 3 months for life! The surgeon said that I was very lucky to have been fit enough for surgery and really I should have been started on the injections months before the oesophagectomy! Somehow my pre op bloods had passed muster so to speek! I still have the pins and needles, numbness, cold feet, tiredness etc. At least you know what you're up against now! But please, please beg you never ever miss an injection or you could go ver ill! You can miss an injection by a week no more or the symptoms will magnify and make you very ill! So never, ever miss an injection. I was 2 weeks late having one once and ended up in hospital on a drip! Take care!

[Xxholly01xx in reply to 2Chrissie4]

Thank u so much for replying I guess the pins n needles are somet I've gotta get used to I have so many off days I can't wait to start getting the injections to be honest I'm just annoyed there making me wait even longer my mum says they should at least be treating the anaemia whilst waiting but they haven't told me anything good luck for the future

[2Chrissie4 in reply to Xxholly01xx]

They can't treat this disease that is why it is ca"led Penicious Anaemia! All they can do is give you injections to help alieviate the symptoms! Google pernicious and you'll know what mean. This disease is incurable but can be managed! It is to do with the size of the red blood cells in the haemoglobin! If you don't have the injections thesize of the red blood cells gets bigger but doesn't carry any more oxygen for fuel! Imagine a small balloon filled witha small amount of oxygen ok. In Pernicious Anaemia the size of the cells carrying the oxygen gets bigger and bigger but the oxygen doesn't get any more! Think on that! I know this as a haematologist graphically explained to me the seriousness of this disease when I ended up in hospital after missing one injection by 2 weeks! The doctors told me then when I tolld them that I had missed my injection that I must I repeat must have my injections on time and then they had to rush and arrange for me to have the missed injection!

[Xxholly01xx in reply to 2Chrissie4]

Everyone says they were ill when diagnosed or missed an injection in what way do u mean it cos I feel ill everyday lol I never go the doctors unless I'm really ill and only go hospital when in literally screaming in pain x

[2Chrissie4 in reply to Xxholly01xx]

Look the Hydrococobailin is an intrisic factor essential to the formation and repair of cell production. Lack of this factor which is normally made by the stomach lining can cause the severity of symptoms you are experiencing. Sorry if am coming over as a right bitch but I just had my latest injection today and the stuff stings like merry hell when it is injected and it always leaves me a bit gumpy for a day or two. I always know when am due an injection because about 2 weeks beforehand I start falling asleep during the day and the other symptoms start coming back. That is one reason that say that how important it is to keep up with these injections when they are due. I won't hide the fact that they are not pleasant at thetime but ou do feel the benefits very quickly much quickly than tablets. You don't know what is in the tablets and even if you know who makes them they can have allsorts in them which can harm you while the injections are a lot more hygenically and safer trust me on this one. You say that your mother was saying that they should treat the anaemia while you wait for the injections? One word they can't. The doctor has to take blood samples from you and the path lab works out how strong your injections should be and how often you should have them. Better safe than sorry. It usually starts as a course of 3 to 4 injections over 2 weeks then a weekly injection for a further 2 weeks then one injection per month or every 3 months like me. They need to work out the correct dose as toomuch can also be harmfull as too little. Good Luck! Please post on this site when you start having them for support. I will admit they *re not pleasent but are lifesaving so please grit your teeth and have them for your sake.

[Xxholly01xx in reply to 2Chrissie4]

U don't sound like a bitch lol I apreciate ur responses and ur help I suppose I've been ill for so long I've forgotten what it feels like to not be ill my mum is like me don't know anything about it she has the injections but only cos she had surgery on her stomach so it's totally different for her my blood test is on the 23rd sept so I will let u know how I get on and again thank u for ur help I hope u feel better soon now u have had ur injection x

[2Chrissie4 in reply to Xxholly01xx]

Good Luck when you have your blood test. I know quite a few people who have never had surgery who have to have these injections. Don't worry your doctor knows what is best for you. Go by what they say ok. Contact me if you want a further chat. I can get carried away with my tounge sometimes so please bear with me on this one!

[B12Turbo]

Hi Holly 01

Your G.P. is probably thinking of submitting a blood sample for Intrinsic Factor analysis and possibly for Parietal Cell Antibodies, if both these come back as negative, then you may be able to build your B12 levels up via Cytacon B12 tablets at 50 micrograms, taking 2 or 3 daily, along with this I used Activis Vitamin B Compound Strong Tablets. I would recommend taking one of each at the same time and spreading the time frame during the day. IE. One of each in the morning after breakfast and the same again after your evening meal. I found that with taking 2 tablets per day after meals, I was able to raise my Serum B12 from 131 up to 478 in under 6 weeks and NO INJECTION had to be endured, with the dangers of all the side effect that may come with them. I feel at least with the tablets, if they don't suit you, then you simply stop taking them and look at some other method. The reason I have suggested taking the Actvis tablets, is that they contain B1 - B2 - B3 and B6. Now from my own research, I have ascertained that B2 is needed to activate B6 and B6 is required for the absorption of B12. One thing I would add to the above, is that as far as I am aware, only Cytacon make a licenced B12 tablet and that I feel is very important, so don't get fobbed off with some cheap alternative.

Now if all the above goes well, then I would strongly suggest that you contact Guy's / St. Thomas's Hospital in London and arrange for a Holo TC test and if that's comes back in the Gray area, then an MMA test may be needed in order to fully establish the exact take up figures for the B12. The man to talk to is a Dr. Dominic Harrington, Dominic is the Scientific Director at Guy's and he can be best contacted through Denise O'Blien on 0207 188 7188, Denise will give you all the info on their testing procedures and possibly put you in touch with Dr. Harrington directly.He is also the Director of the Nutristasis Unit and Head of Haemostasis & Thrombosis. As I said, definitely a man well worth talking to!!!!

Well Good Luck, I hope you get sorted out and soon feel a lot better

Best wishes B12 Turbo..

[2Chrissie4 in reply to B12Turbo]

Have you nearly died from lack of B12? I have! You deffinately need these injections as they contain HYDROXOCOBALAMIN! This is essential for healthy cell building and repair of any damage to cells! I have been privaliged to be able to talk to quite a few specialists who are experts in Pernicious Anaemia and they all tell me that taking these injections is the only surefire way of managing this disease! I have had Pernicious Anaemia now for over 10 years and thought like you can manage my intake of B12 orally via tablets! Not so almost died and was very ill for almost 3 months while doctors stabalized my Pernicious Anaemia. If the doctors tell you that you need to have a course of injections and then one every month or every 3 months then that is wha you do They know best do you! Never presume you know more than they do as you are playing with peoples lives and yes I do know what I am talking about!!

[2Chrissie4 in reply to B12Turbo]

Please, please don' advise people not to have these injections! They are lifesaving for millions of people. If you decide to take tablets instead of iinjections then that is up to you but please do not advise or tell people not to have these injections. The wrong advise can be dangerous. This was pressed onto me when nearly died because I was late with only one injection! The hydroxocobalingivenby injection gets into the bloodstream much quicker than tablets and yes hydroxocobalin is an intrisic factor essential to cell life and aids the stomach and small bowel to digest food. For some poeple who have their stomachs removed for instance must have these injections for life. Please research this carefully for your sake! Thank you for reading my rant! I base what say on medical evidence and proof!

[B12Turbo]

Dear Chrissie4

Please re-read my reply, I assume you are referring to that, please I would never advise anyone to definitely do anything, least of all NOT HAVE injection of B12. My reply simple states that Holly01's G.P. may simply be going to send her blood for the first stage tests and goes on to say that "IF" these prove NEG then she could consider taking tablets as I have done and still do, along with regular blood tests, you will also note that her level of 189 is not that low at the moment, presuming the markers are the usual 150 to 1000. Lots of people hate the idea of injections and many sadly suffer nasty side effects from them. However; I do see your point and if I have upset you, then I'm sorry, but you will please note that I also suggest that she seeks what I believe to be one of the finest teams in Britain's advice, namely that of Guy's / St Thomas's Hospital in London and I even provided her with the contacts names and phone numbers. I am sorry you feel, that what I honestly feel (if read properly) is good advice, based simply upon my own findings and research, plus what I believe to be the very best tests, by the very best teams of medical experts, then I wonder what your basis is for such thinking. Please Chrissie4, this is a very difficult problem, one which no one seems to have an answer for at present, lets all try and help each other along the way, but please read any and all advice two or three times and very carefully. Let's hope we all feel better soon.

Kindest regards and best wishes

B12 Turbo.

[Hidden]

You can get lots more advice and information about B12 deficiency from the Pernicious Anaemia Society (PAS) and B12d.org, website links below:

pernicious-anaemia-society....

b12d.org/

And this Patient UK article is also a good summary:

patient.co.uk/doctor/Pernic...

I imagine your doctor is testing you for intrinsic factor antibodies, please be aware that these are only positive in about 50% of PA sufferers, so a negative result does not mean you don't have PA.

The standard treatment in the UK is a loading dose of 6 hydroxocobalamin injections over about 2 weeks, followed by a maintenance jab every 2 or 3 months. The guidelines make an allowance for continuing injections every other day until no further improvement if neuro symptoms are present, but very few doctors will do this. You can prop yourself up between injections with B12 sublinguals (melt under the tongue tablets) or sprays. It is considered best to use Methyl B12, although some people prefer Hydroxo, trial and error is the name of the game.

It is also a good idea to take a good B-Complex, and make sure you have good levels of folate and iron/ferritin. B12, folate and iron all work together in the healthy formation of red blood cells. Being "in range" but low on any of these is not ideal.

189 is a very low level of serum B12 (the ranges are set way too low, I was deficient at 310) so make sure you do get some treatment.

Hampster

[GetTheJDIn]

Ive spoken to dr harrington and the guys hospital team before.

they've not told me anything I already knew.

For the tests you need a letter from your GP.

The mma test can be done via your local GP if they get the go ahead from a consultant from your local hospital e.g. a chemical pathologist.

Guys / St Thomas hospital are in the process of setting up a private practice where you can pay to see a consultant and get the tests. This was 6 weeks ago and ive still not heard anything back.

I'm on monthly injections now after my mma was too high and even though my b12 test which was done at the same time was in the 'acceptable' range.

I still dont feel great - pins and needles and memory loss.

looking at taking methyl tablets.

[GetTheJDIn]

Forgot to mention the injections dont hurt.

I used to have them on my arm but the last 3 I've not had on my arm, instead on the top of my butt !

They 'hurt' even less.

[Jill60]

I have the injections and they don't hurt at all been having them 3 monthly for 18 months, but we are all different.......so good luck with the jabs, stay positive and just relax your arm, I also do not have any side affects when having them, although I feel I need them sooner than 3 months, I feel the injections 'wear off' at 8 weeks...