I am hoping someone may be able to offer me some advice.
I have suffered from low b12 since 16 (that's when it was first noticed anyway). Through my teens and early 20s I was put on various courses of b12 injections when symptoms got bad (fatigue, coldness, pins and needles etc).
I returned to my doctor two years ago (then 26) suffering with very bad thingling (particularly in my fingers and toes) and chronic fatigue. At that stage I was working in a stressful job and the doctor put it down to stress. Fast forward to this year after years of feeling very unwell with too many symptoms to count (fatigue, swollen tongue, thingling, numbness, balance being off, position sense altered etc) I ended up in hospital with optic neuritis. Not one doctor asked about my medical history with b12 despite me continuing to tell them, it was just dismissed and I was basically told I 90% had ms. I had a brain MRI while I was being treated in hospital and it should areas of demylenation. After being discharged I went to my gp again he completely dismissed anything b12 related and basically told me I'd have to see a neurologist but he reckoned it was more than likely ms. I again asked to be tested for pernicious anemia and he took bloods but when results came back he told he I didn't have anemia?! I then began self injecting b12 weekly and started to feel heaps betters. In the meantime I requested copies of my blood results and low and behold when I requested these it turns out I also have a folate deficiency (which I was never told) so I am now on folic acid too as well as b12 and I can't explain how much better I feel already and it's only been three weeks since this combination started.
My question I suppose is am I being naive thinking that all my issues are b12/folate related? Could years of neglect cause demyelination and my symptoms? Also is it possible I have pernicious anemia?
I am really struggling to get any medical support and I am just fobbed off when I suggest I have pernicious anemia. No one is listening. I am based in Ireland by the way.
Any help would be greatly appreciated.
On a side note my b12 level was 60 at certain points throughout my life and when between when it was tested in hospital and a week later in my gps the level had dropped by 200, in a week! Can't be normal right?
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Sorry to hear what you've been through - it sounds inexcusable in my view. There are others here with far more experience, but from my fairly recent knowledge I'd say that it's entirely possible that your symptoms are B12 and/or folate related. Demylenation is something that can certainly happen with B12 deficiency if it's not treated properly and the latest guidelines are very clear on the dangers of not doing so where there are symptoms, even if tests do not support a direct diagnosis.
Some of the following will be based on the UK guidelines and suggestions, but hopefully some of it will also be the case in Ireland - I'm afraid I don't have any local knowledge about the way their systems work.
A couple of things stick out to me from your history:
1. When you were first diagnosed with b12 deficiency, they should have looked for a cause - there are a couple of things that can cause it that can be corrected (h pylori infection, inadequate diet) but in every other case you should have been put on b12 injections for life. There is no other recognised treatment as the other underlying causes are treatable but not as yet curable. With tingling, in the UK you should have been put on injections on alternate days until symptoms stopped improving, and then every 8 weeks, but for many people that is not enough to help them feel well and they need it more regularly.
2. The most common cause is Pernicious Anaemia, but there are others - and these days the guidelines are more about treating the symptoms than the cause, because the tests for PA are not reliable enough to be sure a negative test rules it out. Other conditions like coeliac disease, Chron's disease and some other auto immune conditions can also cause B12 deficiency, because the gut is not able to extract B12 properly from food in the normal way.
Your GP is clearly not dealing with the situation properly - it's possible a neurologist will, so a referral may be the best outcome, but I think you need to get things put in writing, because your treatment sounds not far short of scandalous, if not actually malpractise.
There is a lot of information at the Pernicious Anaemia Society - pernicious-anaemia-society.... - and they may well be able to help you get the treatment you need and deserve (If not directly because you are in Ireland then at least by pointing you to the right places). There is also some useful information at b12d.org/ including suggested letters to write to our GP.
The most recent UK guidelines may well be a useful read - and something to give to your GP, if you can refrain from beating him round the head with them!
are the two main ones though there are other good resources, but I won't overload you straight away.
Do you have copies of any previous blood tests and/or the most recent one? There is no way anyone can tell if you have a B12 deficiency or not unless it is tested. In many cases a full blood test will give signs of anaemia because of Macrocytosis (large blood cells) but it is entirely possible to have normal bloods and still have a low B12 (as recently occurred in my case, after a year of numbness in fingers).
It sounds like there might be some benefit in seeking all your medical records, particularly from when you were being treated for it. That may be difficult if you've changed area etc, but I gather it is possible - though there may be a charge for the full amount. At the very least you should be able to get every blood test you've had recently, which may help people on here give you some further guidance.
At least with you self injecting you are getting some of what you need, but it may be that you will need a lot more to make up for potential damage.
GPs are regularly misinformed or ignorant of the correct treatment for B12, but your case seems to be a particularly bad one.
Hopefully there will be someone on here with more experience of the Ireland aspect who can advise.
In the meantime, do not give up and keep looking for the right support so you can get the treatment you need. Good Luck!
At times over the last few years particularly in the last few months I feel like I'm Talking to the wall when I'm trying to get someone to listen to me and at times I feel like I'm crazy when I'm trying to get my point across to my doctor.
I have requested my blood results in writing going back over the years and that's when it transpired I also have a folate deficiency. The prescription for this was sent to me in the post however I am yet to receive my blood results as requested.
I have a referral to see a neurologist in a few months and am also on the look out for a new gp.
Thank you for the links to helpful sites. I will read the guidelines and bring them with me next time I am with a doctor. I feel so drained by the whole situation but knowledge is power and I've learned with this that I need to keep trying to get someone to listen to me.
The low b12 was first noticed following a very bad dose of glandular fever I had in my teens. I also forgot to mention both my parents suffer from low b12.
I've only come to this forum and the knowledge recently, but it's already clear to me just how much confusion and ignorance there is out there, even when the most recent medical guidelines seem to be consistent and clear on the significance of B12 deficiency and the importance of treatment.
I hope I'm wrong, but it almost sounds as though it was only once your blood results were printed that someone realised your folate levels and is trying to 'cover their tracks'. In any rate you definitely need to push to obtain them as they should give you a much clearer idea of where things are. A new GP definitely sounds like a worthwhile step.
There are lots of other useful links to various guidelines etc, but I am not sure how they relate to Ireland, so it may be worth doing some searching there - in the UK many of the trusts have their own guidelines, which unfortunately don't always match the national ones.
If anyone says that because you don't have 'anaemia' then you can't have PA or B12 deficiency, then you can wave this at them:
It's suggested that up to 20% of people can have PA or B12 deficiency without having the classic anaemia signs (sometimes because it hasn't developed yet, other times just because that is how they present). An iron deficiency can also mask some of the signs in blood, so it's important to be tested for all 3 - B12, folate and Iron.
If you find a neurologist gets you nowhere, then a haematologist may be another worthwhile referral - they seem to be best placed to understand the latest medical views on it.
My short experience is that if you take the time to gather information and quote it in context to medical people, particularly when sticking to the 'official' sources, then most of them will appreciate that you are not just being difficult and will take you more seriously. There are always exceptions though!
I was a bit disheartened by the whole situation but this forum has given me another push to keep going with it until someone properly assesses me and listens to me and my history properly.
Insist your doctor or get another doctor to specifically test for B12. Some people have symptoms with differing test results, (my son's never got nearly like mine) but of course he didn't wait as long to get treatment because of my experience in 2001. It used to be one person in 100's of thousands had a case like mine, most doctors I talk to say they've never seen a case like mine.
Aww, that is awful treatment. I really feel for you. Unfortunately I went through the same delay in diagnosis. I had symptoms for 25 years, including bouts of anemia (but that was because I was a silly girl and didn't eat properly - apparently!)
Even though both of my parents have P.A., they never thought to test for it. I had to demand to be tested for IF and PC, which were both positive. I hate being confrontational with docs (always scared they're going to chuck me off the books), but if it's the only way that things are going to sorted, then needs must. If I hadn't have done, I dread to think what state I would be in by now.
It's criminal that doctors let so many people suffer needlessly. It's not just in P.A. this happens with but many, many other conditions too.
Thanks for your reply and sorry to hear it took so long for your diagnosis.
When I was younger I accepted with doctor were advising for treatment or not advising but now that I am older I am asking far more questions and trying to educate myself as much as possible. I will continue to ask questions until I feel happy that a conclusion has been reached and I am on a proper treatment plan. At times it can be very frustrating and draining.
Yes it it possible you have pernicious anaemia, but it is also highly possible you have MS, you said they were 90% sure of that, do not dismiss that so readily. You may have both.
Personally I have pernicious anaemia AND Ideopathic Terminal Ileal Dysfunction.
Trust in your GP to refer you to neurology but also ask for a referral to HAEMATOLOGY.
I am not ruling out anything but I just find it odd that certain percentages etc have been thrown at me without anyone asking about my history or properly analysing my blood results. I have found the whole thing so frustrating but will continue to follow it through.
Hi venus92. Well, your post makes for very sorry reading and unfortunately, we read these kind of posts all too often.
I expect you're having real trouble trusting your GP at the moment (understatement) so you're doing exactly the right thing doing your own research and collecting evidence and information.
Not surprised you're frustrated (and probably angry too)...I'm frustrated for you.
You've had some really good advice from GavinUK so I'll just add a couple of things that might help.
First, giving you an occasional B12 injection when you were feeling at your worst is just ridiculous...you should have received ongoing treatment with injections on a regular regime (but I think you know that 😉).
Second - you don't given the reference range for your serum B12 when originally diagnosed but...60 is very very low - whatever the reference range. You should have received intensive B12 injections (in the UK, every other day until no further improvement - sometimes for many months).
And this is vitally important when neurological symptoms are present - as in your case (more about this below).
Third - the fact that both your parents have issues with B12 is significant and should be taken into consideration by your doctors.
Whether you have PA or not (and you could have, even if you have the anti-IF antibodies test and test negative, since 40-60% of people with PA test negative) is a moot point since the treatment for PA is treatment for the B12 deficency it causes. So the treatment for B12 deficency is the same as treatment for PA - B12 injections).
Something worth knowing - now that you are self-injecting with B12, your serum B12 should be very high - perhaps over the top of the reference range. Your GP (and perhaps the neurologist too) might think that this means that you do not have B12 deficency. This is wrong. The high levels of B12 simply show that you have large amounts of B12 circulating in your blood due to having B12 injections. It does not mean that you do not have B12 deficency and the high levels do not correlate to the efficacy of treatment. So...high levels of B12 following injections should not be used as a reason to stop injections...or to tell you that you don't have B12 deficency (your previous serum B12 tests show that you had severe B12 deficency). Your doctors should be looking at your symptoms, not your test results (all the Uk guidelines state that B12 testing is meaningless once injections have started - unless looking for low levels - in which case, more frequent B12 injections are required).
And yes....you're right about the swift drop in your B12 levels. Some people hypermetabolise vitamin B12 and it clears from the blood very quickly - nobody knows why - and you may well be one of those people. The 'fix' here is to have more frequent B12 injections - that is, injections frequent enough to keep your symptoms at bay (this differs for each individual because we all have different symptoms and bodies that deal with B12 and system repair at different rates. Again, nobody knows why this is so - the PAS is currently engaged in driving research to investigate this.
Now - about the demyelination and 90% possibility of MS.
Yes...it is possible that the demyelination could be caused by what you describe as 'years of neglect' (and it certainly is that).
Untreated or untreated B12 deficency can cause a neurological condition called subacute combined degeneration of the spinal cord. This causes demyelination of the spinal cord and progressive neurological symptoms/damage (the damage is sometimes reversible but this takes some time as neurological repair takes longer that other forms of repair following B12 deficiency).
Another thing - B12 deficency is sometimes misdiagnosed as MS, CFS, fibromyalgia, depression, anxiety, hypochondria...and a host of other things too.
It's obviously not possible to say that this is what's happened (or happening) in your case but one thing's for sure...if your doctors are not aware of this condition, or of the neurological havoc that B12 deficency can wreak on the body...then they won't be looking for this as a potential cause for your problems...and they should be ruling it out - or in.
Unfortunately, far too many doctors have never heard of this...so...there's informqtion about this in the PAS library (if you're a member) or your can find information about it on the Internet. I'd certainly bring this to your GP's attention as he's obviously not heard of it (nor much about B12 deficency, by all accounts).
Here's a link to a document that might bring this into focus and make him listen. It's the UKNEQAS B12 treatment alert and it specifically states the connection between B12 deficency, neurological symptoms, and subacute combined degeneration of the spinal cord - and stresses the importance of B12 injections being given immediately - even if B12 levels are 'normal' - and yours certainly were not (prior to B12 injections)...and your neurological symptoms now dictate that you should be treated with intensive B12 therapy...whatever your current serum B12 levels.
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
At least this will put the connection between neurological symptoms / demyelination firmly on his radar.
I think that fact that you have some improvement since starting self-Injecting is really good news. And if I was you I'd certainly continue with these, since delay in treating neurological symptoms is not good - and it sounds that you're unlikely to get appropriate treatment from a doctor - any doctor - any time soon.
But be aware - you will have to tell your GP/consultants that you are doing this so that they can factor this is when interpreting blood results. You may also have to provide evidence to support your arguments...for reason outlined above (you would be surprised - but perhaps not - about the number of posts we have here where injections have been stopped simply because serum B12 levels are 'too high' 😱).
Finally, Venus92...very well done for your determination to follow this through. You're absolutely right to do this.
All here know how difficult this can be so take heart that you are not alone and that there are people here who can support and help you, as and when needed.
I'm going to post this reply now but then I'm going to do a new reply and leave you some links to more information that may help you (if I leave this reply to get the links, it will will disappear...and I'll have to start again).
It might look like a lot of links, but most are only one page long...and they're all annotated so that you can find the things most immediately relevant to you, quite easily...and read those first 😉😀.
Please do post again if you have more questions or need more help...take care...and we'd all love to hear how you get on.
👍
P.s. And good luck with the search for a new GP...your current one is...well...🙄
Thank you so so much for taking the time to write such a comprehensive reply to me. I am honestly so appreciative of the information you have provided to me.
Previously I had just accepted that I suffered with low b12 but now I want to keep asking questions and your reply was great to give me a point of reference for these questions.
Hopefully once I can get my blood results from my doctor I will be able to investigate the levels further. I am genuinely shocked that I am at the stage where I have to do this investigating but from reading posts and here and from the replies I have received it is such a comfort to me knowing I am not alone and I am not going mad!
Thank you for all the links you have provided also I will be reading up over the weekend! The more information I have the better.
Overall I feel like because my MRI showed demylenation it was ms and that was that and I just feel like there is so much more to my story that isn't being listened to at the moment. Hopefully when I see a neurologist this will be taken into consideration also.
I will power on though until I am satisfied all avenues have been explored.
Really no problem Venus92...like many here, I've been where you are now...and finding this forum was what kept me sane...and enabled me to get proper treatment for B12 deficency and also set me on the road to getting other autoimmune conditions correctly diagnosed (treatment pending 😀).
Think Imforgot to say...some neurologists are well informed about B12 deficency and the potential neurological comsequences of under treatment...some not so much.
Really hope you'll hit luck with the one you see but...just in case...take along a list of questions/points you wish to raise (B12 deficiency v MS) and highlighted evidence (so they can read the relevant bits quickly).
It's also useful if you can take someone with you - doctors are often more attentive and less hostile,if there is a witness in the room. Sad but true.
It would also help if the person with you could be familiar with your information and evidence so that they can step in and support you, if necessary.
It's really really tough trying to challenge doctors, so be strong and have the courage of your convictions (or should I say your evidence 😀).
And please do post again if you have any more questions or there's anything you need clarifying...B12 deficency can be quite a complex little monster 😱.
Very best of luck...will be looking out for your updates.
👍
And do keep in mind that some here choose to self inject with B12 if all options with doctors have been exhausted...so if you do reach this stage, folks here can advise about reliable safe sources etc...but I'm sincerely hoping that you'll get the treatment you should be having...from those who should be prescribing it 🤔😀.
(Note: treatment guidelines are for the UK and may (or may not differ) in Ireland. But...the information about B12 deficiency and PA pertains to all 😀).
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Thank you so much for your reply and the very useful links.
There has been no mention of SACD to date and I have not have MRI of spine yet but I am waiting to see a neurologist. I just want to have a good understanding myself before I see them because to date I have not had good experiences in relation to this and I am struggling to be heard.
Hi Venis 92, your symptoms are b12 related and neurological. You absolutely need b12 injections immediately, not in some months time when further damage may happen. My own symptoms were not picked up and was only diagnosed last June had to do all the research myself and thanks to this site got lots of links and information. My b12 was 164 and my symptoms included ice cold or burning feet, severe spasms, cotton wool and banding sensations in feet and ankles, electric shock like sensations to name a few. These ease a little when I have my injections but never go away completely,. I had to go privately to Neurologist who prescribed one injection weekly, my gp would have had me on the 3 monthly regime. But I self inject a further one or two injections weekly, since last September. As far as I am aware the only thing which can help the nerves to heal is b12 and a lot depends on the length of time you have had symptoms. The neurologist I saw said it can take several years for the nerves to heal but you must treat the symptoms. You will find lots of references to links here on how you should be treated. I hope you can get your treatment started as soon as possible and I wish you well.
Thank you for your reply and I am so sorry to hear you also struggling with a proper diagnosis and treatment plan.
Now that I have started to self inject weekly and am taking folate I have noticed improvements so I am praying things continue to go in that directions. I have realised that I really need to take things into my own hands.
Good decision, the only way forward I think. Also eating lots of folate rich foods are important. I eat banana and kiwi every day, also mango and avocado are rich in folate. Dark green leafy vegetables also important,I squeeze lemon over to increase the iron . I hope you continue to make good progress. Best wishes
Try vegetables that improve your gut health. Try chicory!!!! You can also try psilium husk etc if you like, ginger, garlic etc also help in improving the overall gut health if used with foods but without much spices.
Dont drink hard water
Dont eat anything that causes bloating
Now when your gut bacteria improve you can still use sublingual b12. Oils like black seed oil can help in regeneration of nerves along with b12.
Overall the important thing i told you in this is CHICORY
I'm in the same boat. I was just diagnosed with CIDP which is like MS but it attacks the peripheral nervous system instead of the CNS. Unfortunately my diagnosis is only two weeks old so I have yet to offer you any wisdom as I am still in the early stages of dealing with it. There is a neurologist at Johns Hopkins I've reached out to based on an article I read called how I got my running legs back. If you google those words and B12 deficiency together it should pop up.
It seems to me that if I've always had a B-complex deficiency (genetic tests showed this) and the myelin sheath is made up of B1, B6, and B12 then maybe my body isn't eating it--maybe I just never made good substantial myelin sheath??? Your situation sounds similar. Please keep us posted on anything you find out as I'll be curious.
Oh and FYI my neurologist also doesn't seem phased by my B12 deficiency. He said it can contribute but isn't the cause of CIDP.
Also there is a doctor in the states in Denver at PSL who is doing incredible things with IVIg and MS. Dr. Nash. He's a hematologist. May contact him too.
I want to stress in the strongest possible terms that it's totally possible to have both a B12 deficiency and MS. Optic neuritis is very closely associated with MS. I have had b12 issues from when I was a teenager about 100 years ago. I had 2 bouts with optic neuritis. First one eye went blind, my vision returned, and then a couple of years later the other went blind again my vision returned. I was told during my second bout the same thing I told you that MS and optic neuritis are highly correlated. I didn't act on that information. A couple of years later I had Lermets sign. I didn't spell that right. I looked up the symptoms and found out that it was Lerhmets sign. The research I was reading at the time said that only people with MS would that sign. I'm not sure that is correct but it got me to my doctor who did a MRI which verified MS. I asked her to find the best neurologist in my city. She did and I have been seeing him for 18 years. I live in the United States so I'm sure our medical system is much different but waiting to see neurologist with a diagnosis of MS is dangerous. If you have active symptoms they can give you steroids which can calm them down. My neurologist always gives me 3 days of Intervenous steroids and my symptoms have always gone away except for the time it was really my b12 problem. Also they will start your on a protocol to keep the exacerbations to a minimum which means less damage in the long run.
I'm not trying to scare you. MS is a scary disease. But I can tell you that no one looking at me could even tell I have it. After about 23 years I'm still fully functioning. But once I found out I had it I always got treated promptly.
Found some info that suggests optic neuropathy can be associated with B12 deficiency in some cases. Not sure about difference between optic neuropathy and optic neuritis.
I suffered unknowingly with pernicious anemia for a couple of years at least. I even had doctors tell me I needed counseling because I had so many symptoms having gone into subacute combined degeneration. By the time I found a dr that did a full blood test the results were (NO DETECTABLE B12) you can imagine the mess I was in. Too long to go into here. If you are eating any meat, eggs, milk, cheese etc then it's not your diet. If you haven't had a stomach by-pass then the problem is probably you don't have the intrinsic factor your digestive system needs to absorb B12. You need to be on B12 via either shots or injections for the rest of your life. (your life can depend on it) Many doctors do not test specifically for B12. It is not the standard blood test. Just keep in mind, you loose your muscle control, memory, vision, good and bad sensations, Every nerve in your body becomes damaged or dies which will eventually lead to death if your case is severe. (as mine was) Symptoms to many to list. My heart I am sure would have been the death of me due to rhythms I was experiencing. Take Your B12!
I'm Irish too but born in Canada. I was misdiagnosed with MS and am very upset because all I needed was Vitamin B12 and folate. And I was B12 deficient and my doctor told me to take supplements and I can't absorb them due to lack of intrinsic factor.
Don't know where to see a specialist in London, ON
Firstly I am so sorry for you that you were misdiagnosed, how awful. Secondly I can’t say I have had any luck in finding a medical professional in Ireland who has expertise in PA. Any time I have mentioned it I am very much dismissed. Which can be very frustrating. Having said that though I am on regular vitamin b12 injections, taking folic acid and vitamin d now since I first posted on here and my life has vastly vastly improved. I genuinely feel like a new person. If I have learnt anything over the last year it is to question absolutely everything you are told and do your own research. Keep going until you feel like you’re getting some answers or getting somewhere with it and change doctor if you feel they aren’t listening. Sorry I can’t be of any more help.
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