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My B12 story (Jodi Bassett)

I have been helped so much recently by reading the facts of many B12 deficiency cases online so I have decided to share my own.

In summary, I have had M.E. since 1995 when I was 19. I developed symptoms of B12 deficiency (on top of my primary disease) in early 2012. I was not aware that these new symptoms were B12 deficiency for around 18 months. 18 months after these new symptoms started I began high dose B12 treatment - to pretty wonderful effect, as these pages will explain. There is more information about my treatment regime and illness etc. all over this website. Just click on the Home link at the top of the page to start reading.

If you have any new onset neurological issues, nerve pain, oedema, bladder or kidney weirdness etc. make sure you investigate B12 deficiency! It is very simple to treat but early diagnosis is vital. See page 3 for some great B12 book and website links.

Best wishes to everyone reading for your future health.

My personal B12 deficiency symptom list

Some of these symptoms may also be related to low iron/anaemia. Please see the B12 links page for lists of common B12 deficiency symptoms. This is just my own list and may or may not be typical in some ways.


Parasthesia. I had numbness and tingling in both legs. I had none in my feet and half a dozen times I had some in one hand in the 2 months before treatment only. The leg numbness was very mild and lasted only 5 minutes or so, perhaps once a week at first and then every few days.


Burning pain and strange tingling sensations on the back of the legs. Very severe pain.


Burning pain in my upper arms and legs. It felt like vein pain but I now know it is nerve pain caused by nerve damage. My upper arms and legs felt under a lot of pressure and were very swollen with lymph fluid. There was a large amount of jelly-like water right under the skin. I estimate I gained about 4 or 5 kg of extra lymph fluid over a few months, about 8 months ago. It was very visible. At times this excess lymph fluid made it impossible for me to bend my limbs properly and for a few weeks, before I learned some lymph fluid reduction strategies, I was unable to lie in bed with any limb bent at all and with any limb touching or putting pressure on another one. It was very uncomfortable and horrible, especially as I am bedbound mostly. I felt like I was being suffocated by all the lymph fluid. It is hard to explain. Also, on maybe a dozen days I woke up feeling very ill or woke up suddenly upright in bed in the middle of the night very ill and feeling like I was dying. I felt like I had extra lymph fluid in my head but obviously I am not aware of the exact pathology of it all. It very much affected my ability to think. Again, very hard to explain, and very very scary. 


Sensitivity to pressure in my upper thighs. The nerves in my upper thighs were so painful and when my (small) cat would try to sleep as usual on my lap, I'd hit the roof with the agony of it.


Forearm pain and strange sensations. I had some days where it felt like my lower arm had no blood or circulation in it at all. It was a strange feeling of intense pressure and wrongness in my arm.


Burning pain and sudden weakness in my calves. On a dozen or so occasions it made standing impossible. Very painful.


Tinnitus. About a dozen episodes of it lasting just a few minutes each, in the 3 months before diagnosis


Vertigo. About a dozen episodes of it lasting just a few minutes each, in the 3 months before diagnosis.


Weakness of legs and arms. Many times I had to get off my computer due to my arms being too weak and painful to continue. Previously my brain and heart issues always made me get offline way before my arms gave out.


Impaired position sense. I was hitting the edges of doors with my shoulders a lot.


Abnormal gait. I had this previously but it feels like it has worsened. Worse in the dark.


Restless legs.


Decreased and blurred vision. For the first time ever, because usually I hate all the extra eye movement they involve, I started reading in large text. My vision was so blurry I couldn't focus on text very well.


Forgetfulness, memory loss, lack of concentration and inability to focus. I'm not sure if this is the low B12 or a low iron issue.


Nominal aphasia - difficulty recalling names or words. Again this is an M.E. symptom I have had for years, as well.


Radiculopathy, spinal nerve pain - commonly in lower back and neck. Lots of pain in the kidneys as well.


Bladder issues. Inability to start urinating, retention, and inability to feel bladder fullness accurately and feeling of incomplete bladder emptying. On and off UTI-like symptoms such as fever and burning urination as well, probably caused by the other bladder nerve issues.

 

Anaemia


Generalised weakness and fatigue. I was tired all the time, and very physically and mentally foggy. (Very different to how M.E. made me feel. M.E. is not about being TATT.)


Breathlessness. This symptom was scarily bad just before I began B12 treatment. It only appeared in the last month before treatment. Different to the breathlessness I've had as part of M.E. too, due to the cause being different I suppose.

Pallor.

Pale appearance to the lining of lower eyelids. Mine looked almost white.

 

Epigastric pain (poor digestion, being massively bloated after eating small or

normal sized meals). Not relieved/improved by HCl or enzyme capsules or rest as similar issues were for years before. My stomach stuck out so much I often looked 6 months pregnant.

Nausea. Almost every day for hours and quite severe.

Unexplained diarrhea.

 

Feeling very cold, or alternating between hot and cold. On several occasions I woke at 3am and was so cold I was shaking enormously. I couldn't get back to sleep without an extra blanket and the heater on all night. It took a long time for the shaking to stop and even when it did I still felt very abnormally cold.

Bright blue, swollen and painful veins in my upper body. I could see so many veins and they all looked so thick and wrong and they hurt and felt like they were under a lot of pressure. At times it felt like they were about to explode.

Premature greying of hair.


Flaking ridged nails.


Difficulty staying asleep. Lots of being awake from 3-5 am.


Headaches and head pressure.


Palpitations/racing heartbeat. This occurred on about a half dozen occasions. Unrelated to overexertion. I would also often wake at 3am with a pounding heart and feeling very ill.


Chest restriction and pressure.


Dribbling. I've never dribbled in my sleep before.


Glossitis - swollen / sore tongue. In a very small way, maybe.


Extreme thirst and increased need for water. This was probably partly to maintain all the extra lymph fluid I had.


Chronic cough. Not an M.E. symptom, ever!


Increased susceptibility to infections. I've caught just about every bug going around in the last year or so.


Some of these symptoms are M.E. symptoms too but for me they were easily to distinguish because my M.E. symptoms had stabilised years earlier and were improving when the B12 deficiency symptoms started. New neurological symptoms just did not occur. It was obvious to me something new was going on on top of the primary M.E. issues, which I knew so well. The symptoms didn't at all change with exertion like M.E. symptoms did, and even while they were worsening, I could see my M.E. symptoms/disabilities continuing to slowly improve. It made no logical sense to me that the M.E. and my general health would continue to slowly improve while at the same time worsening and causing lots of new early-onset type symptoms. B12 deficiency also causes some issues not seen in M.E. such as a persistent cough. So while on paper it may look like the two issues cause many of the same symptoms and would be impossible to distinguish between, the pattern and timing of symptoms and of relapse and remission and so on was quite distinct and telling. (To someone that knows M.E. well anwyay!)


Why my B12 problem was missed for so long

I should have picked up my B12 issue sooner really. I wanted to write this list out just in case it helps anyone else recognise and rethink a possible B12 issue. If my lack of knowledge or foolishness or whatever can help even one person find this thing sooner and prevent permanent damage it'd...  make my year!

Reasons why I think my B12 deficiency wasn't recognised sooner:

 

The tingling and numbness I had in my legs was only once a day at most and never lasted more than a minute or two. It was also not at all painful or unpleasant, so I didn't put much importance on it. It seemed like such a small trivial thing. I put it down to a minor mercury detoxification side-effect. If this symptom were severe I may well have looked into it more and stumbled on B12 deficiency information sooner.

 

Numbness and tingling is often only mentioned as being in the hands and feet in B12 deficiency short symptom lists. I had only leg numbness and tingling until a month ago when I had some in one hand.

 

Often the main symptoms listed for B12 deficiency are quite vague. There are 6 or so vague symptoms listed and these 6 things just didn't resonate with my experiences much at all. I thought mostly B12 deficiency was about fatigue and until the last few months when my iron got really low, that wasn't a standout issue.

 

I knew late-stage B12 deficiency caused neurological damage that could be permanent but I had no idea it could affect your bladder and kidneys and cause all sorts of vein, breathing, lymph and cardiac issues. My awareness of the B12 deficiency facts was poorer than I'd thought it was.

I thought I had 3 or 4 new health problems - and explanations for these new health problems - and didn't realise that they were all part of the same systemic thing.

 

I thought about a month ago that my symptoms may be caused by B6 toxicity, which shares some symptoms with B12 deficiency. My symptoms also seemed to lessen a little when I cut out pyridoxine (and synthetic-folate) supplements, although this didn't last for long.

 

I'm a health and nutrition book junkie. So many of the examples of nutritional deficiencies I had read about talked about deficiencies being prevented with very small amounts of the vitamin that were close to the RDA. I was taking 1000 mcg of adenosyl B12 a day sublingually for at least 3 years prior to B12 deficiency being recognised. I was also taking 300 mcg of methylcobalamin orally in a multi, and a high B12 liver supplement equivalent to 15 g of liver daily, plus I had an appropriately meat-filled diet. I knew the oral forms may not be absorbed well due to gut issues I have but I thought my daily 1000 mcg of sublingual adenosyl B12 was enough to cover me.

 

B12 deficiency wasn't mentioned at all in many of my otherwise excellent health books that went into such details about the benefits and deficiency symptoms of so many vitamins, minerals and other nutrients. Often when it was mentioned it was listed as very rare or just not an issue at all. The doctors that wrote those books need serious re-educating on this issue! Many health books are dangerously out of date.

 

I thought that higher methyl or hydroxy B12 doses really didn't agree with me. They didn't agree with me, I was right about that, but very wrong about the reason for it. It seems like they made me a lot more ill not because I had a weird inability to deal with it but because I needed the vitamin so much and when my body finally got hold of some it had a big healing party all at once. It was doing me good, while making me feel very ill. Taking even 500 mcg a day of sublingual methyl or hydroxy B12 became unbearable within just a few weeks or months when I tried it in 2009 and 2011. I knew B12 was wonderful and was so eager to take lots of it as I had read so often about but I just couldn't do it. I'd pass out in the bath each night (not fun), then pass out quickly when I went to bed. I'd be wide awake for 3 hours or more in the middle of the night but then wake up far earlier than I could cope with the next day. That would make me pass out in a cold fever, which is what happens to me with my primary disease when I have overexerted early in the day. It was like taking knockout drops, circadian-rhythm-distorting knockout drops. I got more and more ill each time and just had to stop taking them. I tried to take higher dose B12 maybe 6 times and had 6 relapses that became unbearbale and made me stop the treatment. To discover I have a B12 deficiency after all that was quite a shock. I'm well aware of healing reactions and have even written about them in the past but this one was so utterly different to all the others I had experienced. At the time it really seemed very stupid for me to even consider pushing past these reactions and continuing B12 treatment in this way. Thank goodness this reaction is hugely lessened in 2013. It's hardcore still, but so far bearable.

 

Many of my symptoms had a very slow and insidious onset and worsened gradually. It is only now a few days into taking B12 at high doses that I realise how much more ill and disabled I had become over the last year or so. I'd just ignored all sorts of new symptoms, maybe partly because I was just getting increasingly fuzzy headed.

 

Because I am a cheapskate! I saw the 'Could it be B12?' book so many times in my 'recommended books' list on Amazon and elsewhere but I thought buying it would be a frivolous purchase. I really wanted to though as I love health books and am a big huge B vitamin fan. Several times in the last 2 years I added it to my cart then deleted it again. I was sure it'd be only a health-trivia read and not affect me at all personally. Huge mistake as it turns out! I should have bought that book in 2011, not 2013. If only!

 

Because I take a lot of supplements, including B12, the general B12 deficiency tests seem not very accurate for someone like me. The 'Could it be B12?' book explains that taking a certain dose of B12 regularly or taking B vitamins by IV sometimes can make B12 tests unreliable. So can having the MTHFR polymorphism, which I have. Inactive forms of B12 accumulate and block the body from using what activated B12 there is resulting in low B12 levels in the body but a high test result. Taking higher dose B6 and betaine HCl can also make your homocysteine test come out normal even if you're very low in B12, although the book doesn't really even mention that. Both my homocysteine and B12 tests came out fine. Sadly I wasn't aware of the MMA urine test or the new activated B12 test before I started B12 therapy.

I was too ill to do as much online researching as I'd like, the last year or so. My brain was also 'full'  from already having to quickly learn a huge amount about how the kidneys, urinary system and lymph systems worked and how to improve issues in these areas in the last year and a half.  I looked into so many separate issues to find ways to minimise my awful symptoms but had no idea they were all linked and had the same cause. I also spent a lot of time learning about the MTHFR issue shown in a gene test and how it affected me and why I needed to avoid fake-folate and why I may need to stick to only activated B6 supplements and so on. I just kept getting nowhere when I did try and research some of my B12 deficiency symptoms too.

Trivia and musings, just for anyone interested :)

Why M.E. is easily distingushed from a B12 deficiency

Myalgic Encephalomyelitis (M.E.) is not at all the same thing as Chronic Fatigue Syndrome (CFS) as most B12 deficiency resources incorrectly state (along with almost everyone else, sadly.)


It is also not true to say that B12 deficiency can cause all the symptoms of M.E. It cannot, although it can cause all the symptoms which are included in CFS definitions.

 

To qualify for CFS you have to be tired and have a few other general symptoms. M.E. is a distinct neurological disease caused by an enterovirus, and which occurs in epidemic and sporadic form and can be fatal. It is defined by various neurological and vascular issues and not by fatigue, exhaustion or malaise. It has several unique features.

 

M.E. and CFS are conflated due to political/vested interest involvement in science. It is a tragedy. Both for M.E. patients and everyone told they have CFS too. So many patients get no medical care or even the financial care they need to survive, let alone basic respect and kindness. There is an enormous amount of medical abuse and mistreatment.

 

Some proportion (under 50% I'd say) of M.E. symptoms can also be caused by B12 deficiency but M.E. also has several unique features and is also clearly and easily separated from B12 deficiency by the acute onset. Patients often know the exact day and hour they became ill with M.E., and the symptoms can be severe starting day one most often, while B12 deficiency symptoms almost always start gradually. (With the exception of B12 deficiency caused by nitrous oxide use.)

It is absolutely true however that many patients diagnosed with CFS in fact have symptoms caused by a primary B12 deficiency. B12 deficiency should also be investigated in any long-term neurologically ill patient (including those with M.S. and M.E.) when new neurological symptoms appear at any stage. B12 deficiency can occur alongside many diseases and some diseases may increase the risk of B12 deficiency by causing poor gut function etc.

 


More information on CFS:

M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.


Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.


The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.


Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.


Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.


The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.


Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.


The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.


Due to outrageous political influences on medicine and government policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.


The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.


The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, B12 deficiency, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.



More information on M.E.:

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.

 

M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were 'atypical multiple sclerosis' and 'atypical polio.'

 

M.E. is an acute (sudden) onset neurological disease initiated by a virus infection (an enterovirus) with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. This is always damaged in M.E., hence the name 'Myalgic Encephalomyelitis.'


M.E. has existed for centuries. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.

 

There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. M.E. can be at least as disabling MS or polio, and many other serious diseases. M.E. is a chronic/lifelong disease that in some cases is fatal.

 

M.E. is a testable and scientifically measurable disease with a number of unique features. It is not difficult to diagnose, even within just a few weeks of onset, using a series of objective tests.

 

M.E. patients are uniquely disabled. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart. The hearts of M.E. patients barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up an astounding 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.

 

This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly (causing severe relapse or even death) and strict individual limits MUST be observed.

 

M.E. patients who are able to rest appropriately and avoid severe or repeated overexertion have repeatedly been shown to have the most positive long-term prognosis.

For more information please see the HFME website.

My B12 story (Jodi Bassett)

B12 page 1: My symptoms, Why my B12 problem was missed for so long, Why M.E. is easily distingushed from a B12 deficiency.

B12 page 2: My B12 deficiency treatment diary.

B12 page 3: Great B12 links and books, Some comments about B12 information.