Don't Know Whether to Laugh or Cry

[Poppet11]

Had an unexpected phone call this weekend.

It was from a 'friend' who I hadn't spoken to for a couple of years.

She was hysterical.

Last time we spoke, was, to say the least, unpleasant.

Her husband, who is only early 50s was starting to suffer clear signs of early dementia. She was laughing about it, as people do in their 'denial' stage, you know the 'cute' forgetfulness thing. I was trying to tell her that, particularly considering his age, it could be caused by B12 deficiency.

Well, I got the usual response. That I was some kind of malingerer who should work harder to take my mind off my obsession and that I thought I knew better than doctors and B12 deficiency was only a vitamin, and that I wasn't really ill and you needed to have anaemia and yadda, yadda.

Basically her compassion was not exactly touching for either me or her husband and we haven't spoken since.

So, he has been getting worse, and quickly. She has had to pack in her job and is basically confined to home to care for him. Remember this couple are only in their early 50s. She has had no professional help either with care or treatment.

Then she is contacted by a friend from the US. The friend has read something, indicating that B12 deficiency causes a long list of illnesses including, amongst many other others, dementia. The friend's husband is a doctor, he checks it out with the BMJ article, and does his own investigation.

The friend in the US convinces the woman in the UK to get her husband's B12 levels checked. Through the floor.

So, she then phones 'me' to ask if the condition can be reversed (This is a woman who called me from here to Hell and back)because the doctor friend in the US suspects that it has now gone on too long.

She now 'believes' that I sustained nerve damage from b12 deficiency (ain't that nice - but I now have a 21cm bicep to 'prove' it) and she is 'sorry' she didn't believe me or listen.

But the biggie is, the article that initially was read by the friend in the US was by yours truly.

Do you laugh or cry? Too late. Far, far too late. Two lives completely ruined all for want of a few vitamin injections.

[Clutter]

Poppett, that's all so sad. If she hadn't been so dismissive of your illness her hubby may not have developed his. All because a simple blood test wasn't done

[Poppet11 in reply to Clutter]

It is sad. I found it really distressing (which is probably why I've wandered back to the boards). To see that happen to people when you've tried to warn them about the impending 'train wreck' is a very strange sensation.

The thing that really gets to me, apart from the fact that people simply refuse to listen or even look at medical information, is that you are telling them to try a vitamin. You aren't suggesting radical surgery, or to go and sit naked under a tree chanting. You are suggesting something very, very simple, which is backed up by medical evidence. It is there. And they simply carry on regardless - and, let's be honest - they are nasty with it. This woman, who I believed was my friend, was nothing short of vile to me. So it makes it all feel even more strange.

[Clutter in reply to Poppet11]

Poppet, I think because it is a vitamin test or supplement being recommended that the idea is dismissed out of hand, as in, how can something as trivial as a vitamin deficiency possibly make you so ill?

[Poppet11]

Yep, you are absolutely right.

The modern mind cannot comprehend it.

If you look at the last 40 years, what the public know of vitamins are that they are something you use to 'boost' you. They are something you buy in health food shops.

The fact that vitamins perform metabolic functions which are essential to life and have been part of the biochemistry of man for a couple of million years seems to have escaped their notice.

And you cannot get past that.

Yet all you have to do, is read.

Of course the most uncomfortable fact is that modern medical professionals also come into the same category of knowledge regarding vitamins as Joe Public. That's the really scary bit - because it is their job to read!

[Polaris]

Your last paragraph says it all Poppet11. Have just tried, tactfully, to warn a long standing nurse friend (on Metformin, statins and heart drugs) of danger of B12 deficiency. I didn't expect my word to be taken but cannot fathom out why there is a reluctance to research it - same with GPs.

Plus, I've never understood why there is willingness to feed plants and animals extra nourishment from vitamins but humans are actively encouraged to exist on junk food and drugs - first do no harm?!!!!

[Poppet11]

Ah, you sent me scuttling for a book.

Oliver Sacks in Awakenings 1990.

When Ldopa came out as a treatment for Parkinsons it was deemed to be a miracle drug - and, for Parkinson's patients it appeared to be just that.

Oliver Sacks was dealing with the post encephaletic patients who had the most extreme form of Parkinson's. He tried it, and, for a very limited length of time (days to weeks in most cases) it appeared to be a miracle. However, his patients then developed an extreme sensitivity to it. They could not titrate doses.

He submitted letters to JAMA etc explaining what was happening and his fear that patients with 'ordinary' Parkinson's would, eventually, develop these 'side effects.'

He was ridiculed, attacked, snubbed. It was a response he could not understand. In short the medical professionals could not believe the drug would eventually produce side effects. One described them as 'beyond credibility'. He invited them to come and see the reactions in his patients - they declined. They would not accept it.

Then ordinary Parkinson's patients started to develop sensitivities. He explains in his book that 5 years after his letters to JAMA, he was showing a film of the side effects in his patients. This was the Awakenings Documentary, not the film. One of the doctors who attended was one of those who had castigated him years before (beyond credibility)

Sacks says that up until that point he hadn't really understood the power of wish to destort and deny. This is a summary of the doctor's reaction when he saw the side effects for himself:

"...First he stared then his mouth dropped open...and his reaction was of almost childlike wonder. Then he flushed a dark and angry crimson...Then he developed a curious tic, a convulsive movement of the head...then finally, with great abruptness and violence...he burst out of his seat, in mid-film, and rushed out of the room."

Some folk just can't cope with being wrong!

[helvella in reply to Poppet11]

It is also well worth reading Oliver Sack's short story Cold Storage - originally published in Granta (and never re-published so far as I know). Not B12, but another disorder.

granta.com/Archive/21

Mentioned in a somewhat bizarre anecdote here:

webofstories.com/play/olive...

[Poppet11 in reply to helvella]

Ooh, I'll definitely look that one out - many thanks!

[helvella in reply to Poppet11]

I bought a copy of Granta 21 solely to get hold of this story. It is very short but I am glad I did so. Just wish I could let people have copies or post it but copyright law doe not allow that, I am afraid.

[Hidden]

Very very sad. Same with my Mum and my Dad, I recognised why he was shuffling, stopped walking when coming out of a lit room into the dark, she complaining, telling him to lift up his feet. After I said test B12, well far to late for him. She still implies I am not really in need of B12, both my kids are only on it because I insisted...as if I would get some other surgery inject me kids with B12 if they did not need it. But its my Mum, she is alone now (Dad died) and I let her be, let her say what ever, she does not know better, but the medical profession should know better.

[Poppet11]

I don't know, Marre - what can you say.

But as you rightly point out the medical profession should know better. They are causing a lot of misery.

[Secondchance]

This is so sad. Which article was it? The Hunt et al 2014 one? Hopefully treatment will at least be trialled though...

[Poppet11]

Well, that was the irony. The article the woman in the US first hit on was my B12 Knock Out Blow - that led her (or her husband) to the Hunt article.

I guess, what I am in all of this, is angry. None of it makes any sense...

On the treatment - oh, no. He can only have an injection once every three months - his b12 levels are normal now. That is the UK doctor speaking, of course. So this woman has got a doctor in the US saying the UK doctor is talking nonsense and needs to read the article and the UK doctor point blank refusing to do so.

Let's face facts, they can't admit they are wrong for a multitude of reasons, not least liability. Much easier to let people suffer and die. Much.

[superdry in reply to Poppet11]

I've only been diagnosed a week and anemia didn't mean a thing to me or 'pernicious' when the dr called me to come in for shots of B12 (that bit was very odd though, it just doesn't happen over here) over the phone she was very interested in my mothers medical history and I told her she had dementia from her very early 50s and it was very hard on me and my sister as she had us in her 40s...I always resented that, she didn't eat much and the house was not clean, she was always cold and falling asleep..all this from a woman who spent her working life as a nursing sister in the UK, I believe now she had untreated PA masked firstly by trigminal neuralgia and dementia (my hearts broken now how we felt she was 'lazy')

[Poppet11 in reply to superdry]

Nothing needs to be masked.

The anaemia part of it doesn't even appear in 20% of cases. The anaemia is not a cause of anything anyway, apart from the usual symptoms of anaemia and, of course, dying of it if you don't get it treated - it's the B12 deficiency which does the damage. And, even if you'd had a test done, they would have treated her in the same way that they treat us - which is inadequately.

I think a lot of us carry guilt. And I think that is why we try and put things right.

Was the B12 deficiency masked by the trigeminal neuralgia and dementia - or should the diagnosis simply have been B12 deficiency?

We've said on these boards before that the suffering which has gone on must be unimaginable. We have the internet - they didn't.

[superdry in reply to Poppet11]

Very true Poppet, my diagnoses was almost instant and although I'm still in ignorance about most areas my dr was patient showing me my results and explaining the numbers (most of which have gone over my head) I do know it's a life long treatment, she explained about the intrinsic factor antibodies in my blood serum, I 'll get it in time - but I'm so glad I found this support forum today - and thank you for your reply, I do feel guilt over my mother, but that's a natural reaction as I'm convinced in an ideal world (I know!) and an early diagnosis (maybe after my birth when she began to show memory loss) things may have been different.

I went in for a blood test to see if I was peri menapausal as I was feeling tired and overworked, I'm glad I did, my daughter suffers mild depression and extreme fatigue so for every night there's always a day. Again I'm happy to be here and thank you

[Chancery in reply to superdry]

Hi Superdry, I was really interested to read your mother had Trigeminal Neuralgia. That's my condition and I'm desperately trying to find connections between it and B12 deficiency. Can you remember the history of your mother's illness at all? I'd be really grateful to hear anything about how her illnesses occurred and how they progressed, if you have the time. My grandmother died of Alzheimers, so the dementia connection is of great concern to me for my own future.

Trigeminal Neuralgia is a rare illness and it's very hard to find anyone with it, and even harder to track down B12 connections to it, so I'm always ecstatic if I find someone else with it!

[superdry in reply to Chancery]

I am beyond sorry to hear you have TN, I remember my mothers attacks as if they were yesterday and her description of them, horriffic, I have also read how painful they are, off the scale......terrible early memories of finding her on the cold kitchen floor. I was talking to my eldest brother tonight over mammy and my diagnoses as he's getting tested for PA soon (my dr recommended this as she thinks there is a strong genetic link and as I also have tested positive for low T4 and T3 re thyroid she said it was a good idea if any of my family we re suffering symptoms - two have for years) - The reason my mam came up in conversation is that her symptoms appeared after she gave birth to my sister and I in her 40s, she was obsessed with keeping warm and ate very little and gradually was asleep or napping constantly, my brother remembers a very clean home growing up, I don't, I was ashamed of her, she looked like an old woman and had tons of tablets (dont rem what for but prob for depression and sleeping tablets) TN hit first but not long after she started forgetting things and I specifically remember her saying to me one summers day 'Nini will you make some tarts' and then, when I told her she had asked me already and I had done so, she, pausing for a moment said, I'm loosing it Nini, I remember her shaking her head in resignation, she knew..she was a nurse..she was on every tablet here available to ease the trigminal pain and frequency of the attacks but nothing worked, we were desperate, she was getting weaker and weaker so my brothers took her to the Private American Hospital in Russell Square, london, for evaluation and eventually for keyhole surgery, from here I need to check facts with my brother I know it was not a success but she was not as bad as she was, and I firmly believe even then if she was treated with B12 she could very possibly be with us today....it was still not too late at that stage in my opinion and I believe there is a link between TN and B12

[Chancery in reply to superdry]

Hi Superdry, many thanks for getting back to me; I appreciate it. So your mother's first illness was TN, is that right? Or do you think she had pernicious anaemia (and, probably, B12 deficiency) first? Can you remember what sequence they occurred in? Was she getting tired and cold before she came down with the TN or did the TN herald all the other illnesses?

I take it the poor woman was never treated with B12? It sounds like she suffered dreadfully. How awful it must have been, especially as B12 deficiency had already been discovered, albeit in a more limited way, and she could have been helped more.

And it sounds like there's a thyroid problem in the family too, is that right? You poor things seem to have had everything thrown at you.

[superdry in reply to Chancery]

I found this article for you

More »

Some patients with facial neuralgia respond favorably to vitamin B12 injections.

PHILADELPHIA—Vitamin B12 deficiency may cause isolated facial neuralgia, independent of trigeminal neuralgia and peripheral neuropathy, according to research presented at the 14th Congress of the International Headache Society. Treatment with B12 injections was found to alleviate the condition.

Jitendra K. Baruah, MD, and Gita R. Baruah, MD, presented a review of 17 patients (10 women; mean age, 55.4) who experienced frequent episodes of isolated unilateral facial neuralgic pain not typical of trigeminal neuralgia. A neurologic examination revealed that corneal and facial sensation, along with the strength of both facial and trigeminal nerve innervated muscles, were normal.

All patients reported a decrease in touch and pain sensation, as well as numbness on the affected side. The blink reflex and trigeminal nerve–evoked response were abnormal, and all subjects had low levels of serum B12 (average, 186.7 pg/mL; reference range, 300 to 900 pg/mL) and high levels of methylmalonic acid, indicating defective gastrointestinal absorption of vitamin B12, the researchers noted.

The patients received intramuscular or subcutaneous injections of 1,000 mcg vitamin B12, once a week for four weeks. The dose was subsequently tapered down to two-week intervals for eight weeks, and then once a month for a year, at which point patients will be re-evaluated.

Identifying and Treating Patients With Facial Neuralgia

The researchers observed the vitamin B12 deficiency during clinical evaluations of patients in their respective practices. “It was somewhat unexpected that vitamin B12 deficiency can cause isolated facial neuralgia,” Dr. Jitendra K. Baruah, a neurologist based in Milwaukee, told Neurology Reviews. “Treatment for facial neuralgia is sometimes very difficult, and patients may often go into multimodalities treatment without much success. Knowing that this condition is remediable with vitamin B12 therapy, it is important to identify these patients and treat them accordingly.”

The investigators also found that many patients with facial neuralgia also developed cold sores (herpes simplex labialis) on the site of the facial neuralgia, and the cold sores also responded to vitamin B12 treatment. “It may be possible that having cold sores means there is an active herpes simplex virus located in the gasserian ganglion, indicating that there may be some compromise of that particular side and these trigeminal nerves are found to be more susceptible to deficiencies to vitamins, such as B12,” Dr. Baruah explained.

—Rebecca K. Abm

[Chancery in reply to superdry]

Many, many thanks for that, Superdry. I have read a version of that before, but not as detailed. Very useful. Thanks again!

[Polaris in reply to Poppet11]

I am still having difficulty getting over my anger that they are so coldly and arrogantly prepared to let people suffer and die a slow, dreadful death, when the treatment is so simple.

If, as it seems, they are so afraid of litigation, I don't understand why they are so hung up about it - legal aid has been severely restricted, plus a friend has just been told by barrister, "Court costs have just gone up from £2,000 to £10,000 and, from now on, justice will be only for the rich" !

Looks like we've gone back to the Middle Ages when life was cheap and we were at the mercy of the robber barons !

[Poppet11 in reply to Polaris]

Middle Ages. Exactly right.

This contemporary 21st century is a scam - it's an illusion. The more 'rights' are put into place the more barriers are constructed against accessing those rights.

Modern medicine has now, in many situations, probably fewer answers than it did a century ago. It refuses to cross examine itself. The only area which has improved is surgery.

Justice is only for the rich - yet everyone is supposed to have a right to justice.

The big joke is that this illness affects a lot of people - including those that put up the barriers. Hard to have sympathy for them.

It was hard to have sympathy for my 'friend' because she had none for me. I have sympathy for her husband in spades. Even now I think the only reason she is upset is because how the situation is affecting her personally.

[Polaris in reply to Poppet11]

Yes, so right - it's beginning to be frightening how many people I hear of in my own age bracket being affected. If that's not bad enough, it looks like more young people are beginning to suffer and are not listened to - fobbed off with antidepressants, blamed on growing pains, hormones, stress, menopause, etc. etc.

For so called intelligent people, GPs, even when told, seem unable to link the social consequences of B12 def, which are generally horrendous.... how many people affected are having their lives wrecked - not listened to, unable to work, family life disrupted, wrongly diagnosed with dementia, committed unnecessarily, permanently disabled..... I despair....

[Poppet11 in reply to Polaris]

How many people now are diagnosed with illnesses of 'unknown' cause. Everyone having the symptoms treated individually which is probably causing more harm than good.

Then we have the doctors' obsession with labeling everyone else with 'emotional' problems.

If you have an illness these days it's either a) unknown cause, b) emotional c) cognitive.

They aren't actually curing anyone!

You know what doctors are meant to do - they are meant to get people back into economic productivity. Yet they are writing off kids in their teens and twenties as being hysterical hypochondriacs.

What I can't for the life of me understand - is why they can't tell what sick people look like. How they can manage to put something like muscle degeneration down to being cognitive!!!!

Why do they think that normal, hardworking people would suddenly turn into hypochondriacs. My hair turned white. My bicep has completely disappeared - it really does measure 21cm in diameter. And they sit there and tell you 'it's gone'

No s..., Sherlock. I think they are accusing me of misplacing it on the way to the surgery.

Not, 'how does it affect your life?' or 'does it hurt?' No, they don't know why that's happened - so best to ignore it and let me get on with managing with it.

If they can dismiss things like this then they are positively dangerous to health.

The kids of today won't even make it till tomorrow!

[Polaris in reply to Poppet11]

So bad what has happened to you - don't ever give up trying to keep the debate going.....

Just read this - another awful example on here of what we've been talking about. Like your bicep, the GPs won't see what is right in front of their noses, even when the clues are staring at them ! As you say, positively dangerous.

healthunlocked.com/pasoc/po...

I'm so glad that we, at least, have this forum to vent.

[Poppet11 in reply to Polaris]

Well, I had to respond to that one.

I think doctors have lost it.

Really.

[superdry]

I agree Polaris, even though I'm new to this, I can see from posts what mis treatment can be like, along with being 'fobbed' off, I worked in health care until I gave my notice in last month due to the symptoms of this, how ironic I was diagnosed a week later! and I would hear first hand about patients (unrelated to this issue completely) with 'imaginary' symptoms (although sometimes true the medical profession should always err on the side of caution).

Also I do understand how Poppet feels, we do loose control to an extent once we enter the surgery door, we become meeker in the hope the dr will give us the best care possible, we won't voice the extent of our own knowledge or contradict for fear of offence despite the fact we are correct. Saying that we have good health care here in this little town and several practices so we as patients can 'shop' and they know it, I believe it helps a little.

At least it's better than the old days, my dad told me when his older brother was very sick as a child and doctors were Gods! he eventually made his way to see the child, after examining him he gave my grandmother two pills and said 'Mrs Foley, give Dan one pill tonight and if he's alive in the morning, give him the other'!!

[Poppet11]

These days it's only doctors who think they are Gods. The rest of us are pig-sick of them.