Better Late Than Never

[Narwhal10]

On 22nd February was World Encephalitis Day. Encephalitis is inflammation of the brain where there are headaches, confusion, vomiting, fever, altered states of consciousness. Pernicious Anaemia is an autoimmune disease so inflammation can be everywhere. The brain is particularly susceptible. So, this can be a complication of PA or any another Autoimmune Disease which we may have.

However, the recognition and management of Encephalitis is very poor by medics. Research shows that ONLY 10% of people are being effectively diagnosed.

thelancet.com/journals/lane....

Susannah Callahan, a New York Journalist, suffered a particular type of Encephalitis. She wrote a book about how she lost a month of her life. Doctors first misdiagnosed her with Alcohol Withdrawal, then added further misdiagnoses of schizophrenia then bipolar 1. Until she had grand mal seizures. Susannah lost a month of her life as she had been drugged and detained in a psychiatric hospital. Hannah Farrell, a British psychology student, also started to have flu like symptoms with her GP telling her that she was mentally sick. She too spent a month detained in a psychiatric hospital and was mis-prescribed antipsychotics.

Professor Guy Leschziner (a British neurologist) says it is quite common for physical diseases to be mistaken for psychiatric illnesses. Both women also complained of numbness, malaise, formication (insects under the skin). My thoughts are with those who may have inflammation of the brain and who are fighting to be heard by the medical community. Please know that psychiatric hospitals have very little medical equipment. Staff are not well equipped to deal with medical diseases. Plus, I am fully aware of those in charge of the wards, asking doctors to increase patients medication. So, the staff can have a ‘quiet night’.

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[Wwwdot]

Hi Narwhal

If this had been written by anyone else I would not have believed it. How utterly depressing!

🤗🤗🤗🤗🤗

[Narwhal10 in reply to Wwwdot]

Sorry Wwwdot,

I added the double rainbow which is an optical phenomenon. If you look closely the colours are a mirror image. The brain has mirror neurons. Recently, I bumped into a neighbour with their 11 month old. Mummy was a mature student so I asked how her studies were going. I congratulated her by clapping and little one started mimicking.

We are all trying to raise awareness of this insidious disease. Neuroplasticity is for another post.

😘 😘 (My hug emoji has runaway and joined the circus).

[Rexz]

This is so important Narwhal!Many us diagnosed with PA have varying levels of cognitive issues especially if untreated for a lengthy time. Cognitive issues can just be related to nerve damage and brain atrophy resulting from prolonged untreated B12 Def.

It is known that 40% of those with PA also have Hashimoto's Thyroiditis which I have. It also is an autoimmune disease. BUT what I've recently learned is the thyroid antibodies associated with Hashimoto's are the same antibodies associated with Hashimoto's Encephalitis. This is a fatal disease if left untreated. The treatment once diagnosed is to take immunosuppressant steroids. Not fun but better than the alternative.

I am scheduled for a series of test for this condition that involves sampling of cerebral spinal fluid via a spinal tap YAY!!! I'm going to love that! 😳 A PET scan and MRI of the brain. My biggest fear is they may find my brain to be the size of a pygmy shrew! 🤣

I only offer all that for you to be on the lookout if you've PA, Hashimoto's, and cognitive issues you may want to see a neurologist.

Best wishes, Rexz

[Rexz in reply to Rexz]

Just to add the seriousness as it is the literal destruction of the brain tissue/cells causing the inflammation. I had the opportunity to see a brain with advanced encephalitis, me being a bit morbid I accepted, and it looked like swiss cheese. I said a prayer for the poor soul. 🙏

[Narwhal10 in reply to Rexz]

Absolutely Rexz.

I do hope the brain of the pygmy shrew is tame. You get diagnosis promptly and treatment.

Sending my very best.

[Rexz in reply to Narwhal10]

Errr, ummm, I can't access the definition of tame and I've forgotten the question! 😜🤗

[Narwhal10 in reply to Rexz]

Oh I’m part dinosaur - Doyouthinkhesawus. There was a question ? When was that ? 🤪🤪😘

[Rexz in reply to Narwhal10]

😂😂😂

[Nackapan in reply to Rexz]

Yes my daughter had a lumbar puncture and brain MRI Before b12 levels tested!

Calcification was seen on the scan.

They were very interested.

Never a good sign.

Otherwise normal

Inflammation was on my brain aMRI with T2 flares and white lesions.

Later told withing normal for my age !

A year later settled 😌

[Rexz in reply to Nackapan]

Oh Nackapan, but you're so young! 😊I do hope my issue is just residual nerve damage from B12 Def. But is good they are being thorough.

[Nackapan in reply to Rexz]

Yes it is good to be thorough.They say you are as young as you feel .

Some days makes me alot older 🤣.

At least mind is bright but body so unwilling at times ....@

[Rexz in reply to Nackapan]

Yep, some days I'm OK. Some days I convince myself I'm going to work at the office. I get up, shower, get dressed, have some breakfast...I'm on a roll! Then I sit on couch to put my shoes on. Almost there... Blah that's as far as I get. Exhausted I just drift off to sleep. 🤣😋. Such is the life of us.

Plus I have an engineering company but I can no longer do simple times table math in my head. 🤯

Now what does one do with that?

Thank God someone invented excel! 💫

[Wwwdot in reply to Rexz]

Hi Rexz

Interesting comment on mental maths. I was also good at mental maths but now it’s like that part of my brain is rusted solid - I just can’t do it - frustrating as it was something I took for granted. Thank you for letting me know I am not alone!

🤗🤗🤗

[Rexz in reply to Wwwdot]

It is the most frustrating thing Wwwdot It took a very long time for me to admit to myself I had trouble doing that. I mean simple 3x4=??? hmmm I know the answer, it's on the tip of my tongue, ok spit it out!!! Nope it's not there. 🧐Look up "Acalculia". There is a specific part of our brain that we use to calculate. In our case that's where nerve damage is most probably residual from prolonged B12d 🤯

[Wwwdot in reply to Rexz]

It’s depressing as I can remember basic tables but adding or subtracting … I can no longer do it - I think I will see if I can fix it as mental maths to an engineer is like a good knife to a chef.

🤗🤗🤗

[Rexz in reply to Wwwdot]

Absolutely! My life has been math! 🙏. Let me know if you find a secret. 🤗

[Wwwdot in reply to Rexz]

Both my kids did Kumon as they were not confident at maths and both ended up top of the class for mental maths. I think I will get some Kumon type papers and do them as it trains the brain - you never know!!

🤗🤗🤗

[Rexz in reply to Wwwdot]

I think you can relearn it. I was also told that our brains do require themselves.But isn't it past your bedtime way over there?!!! 😜😴

[Wwwdot in reply to Rexz]

Yes it is! But I am being good and in bed but the wind and rain are pounding in the windows!

Just downloaded a 7 minute mental math app. It’s call 7 minute maths. It’s free and I think it may work if I do it each day. I do a word one each day and that has helped my word recall.

🤗🤗🤗

[Rexz in reply to Wwwdot]

Funny you say that as I have word recall issues also. These must be the same area of brain???

[Wwwdot in reply to Rexz]

Yes could be but I am

Much better since the word games - kids still remind me when I called the wheelbarrow the microwave!!

🤗🤗🤗

[Rexz in reply to Wwwdot]

Err, what's a microwave? 🤣

[Narwhal10 in reply to Rexz]

It’s a popty ping.

[Snowdrops_17]

Wow didn't realise it is that bad Narwhal 👌 Thank you for highlighting this disease 🙏🥰I wonder why inflammation of the brain happens ❓ What causes this ❓

[Narwhal10]

Inflammation occurs with Autoimmune Diseases. With Pernicious Anaemia, it originates in the gut. The gut and the brain are linked by 8 systems.

The body attacks itself. It is a cascade or domino effect. Immunologists are far better at describing the actual processes.

We have so many different types of cells. In the Immune System, we have things like T-cells, B-Cells, Cytokines and interleukins or IL-s for short. Something triggers them. It could be something in our environment like a virus. They just go into complete overdrive.

I find it quite it quite bizarre though. Inflammation of the joints is called arthritis. Note Arth IT IS. (Rheumatology)

Inflammation of the skin -Derma IT IS - (Dermatology)

Inflammation of the Muscles - Myos IT IS (Rheumatology).

Inflammation of the stomach - Gastr IT IS (Gastroenterology).

Inflammation of blood vessels - Vascul IT IS (Cardiololgy).

Inflammation of lungs - Pneumon IT IS - (Respiratory).

So, all these different departments and specialists. An Autoimmune Disease can cause systemic inflammation - the whole body which includes the brain. Western medicine likes to divide the body up and not think of it as ALL connected. Guess what ? It is.

In the cases of the 2 women, the doctors have initially ignored their physical health and very wrongly thought they were hysterical. The doctors ignored the SCIENCE. Otherwise known as Evidence Based Medicine and totally forgotten what they learnt at Medical School.

🐳

[WIZARD6787]

>>. The gut and the brain are linked by 8 systems.

Currently 8 known systems.

If the origin of the Autoimmune disease was in the brain it would not be known. Neurological System being always on and failing because of it comes to mind.

[WIZARD6787]

>>Please know that psychiatric hospitals have very little medical equipment. Staff are not well equipped to deal with medical diseases.

The mental health clinicians who are gifted and helpful are also ethical and will not practice medicine. Physicians practice mental health treatment.

If a physiatrist were to heal people with B12 they would likely lose the right to practice. Bring a patient with them when traveling to conferences for sex they can be rehabilitated. See Macleans/Harvard psychiatric hospital top three in the world.

[Narwhal10 in reply to WIZARD6787]

Yes, Wizard because Art Therapy is going to heal those with P.A. and encephalitis. Plus, the treatments of antidepressants, antipsychotics, mood stabilisers, ECT must be the treatment. If they do not work. It is clearly the patient’s fault. They simply do not want to get better.

The psychiatrists go home to their nice big homes, their families, have lovely expensive holidays. As do those in the Pharmaceutical Companies. I know several shrinks on a personal level. I avoid them like the plague. They love to talk about how amazing they are. Big egos, small minded. Freud was my favourite. Cocaine snorting, nicotine addiction and sex mad. It was not that long ago homosexuality was deemed a Mental Health disorder too.

Alan Turing could have done with a whacking great dose of cyanocobalamin too. Pardon me for speaking out of turn.

[WIZARD6787 in reply to Narwhal10]

>>It is clearly the patient’s fault. They simply do not want to get better.

That is key for me in understanding health professionals. Not only do they believe they never give bad advice or fail. If the customer proves them wrong they have the professionals have the ability to believe the customer would have been better off had they followed the bad advice. Nobel cause syndrome.

I am losing with those that support the fraudulent professionals by making excuses like they do not have time, they are overworked, it is the system. Always a reason they suck at what they are getting paid to do.

[Rexz in reply to WIZARD6787]

Actually there is a difference between psychiatrist, psychologist, and therapist. All are "mental health professionals". A psychiatrist can make medical diagnosis and prescribe medicine. The others cannot. However, ethically all three should be working with the patients GP or PCP to discount any physical illness, hormone deficiencies, yes, B12 Def. All of these can be a cause for psychosis. These should be eliminated first before anti depressant are prescribed. Unfortunately this rarely happens. I personally watched my dad committed for severe psychosis, blindness and he just withered away and passed. Now that I was diagnosed with PA I recognize all his symptoms like a slap in the face. He had severe undiagnosed, untreated, B12 def and PA. He just needed some frick'n B12 shots!? 🧐

[Narwhal10 in reply to Rexz]

To Remember is To Care,

You have created some great work for others who have this disease. Some doctors have presented your work to other doctors. We will keep chipping away, Rexz. Plus, your journey continues.

Flippant comments by others who have absolutely no comprehension of the depth of personal and professional loss that others have experienced, I feel are careless. Being kind to everyone because all of us are fighting a battle others may know absolutely nothing about.

In loving memory of your father. I have no doubt in my mind that he was a great man. He made you the wonderful person you are. It is extremely sad that he suffered so very unnecessarily.

😞

[Rexz in reply to Narwhal10]

Thank you Narwhal. He was a great man. 🙏 Back then I had doctors way up in a pedestal to be worshipped. It angers me now both at myself, for not knowing better, and at the medical profession for being stupid and uncaring.

[Gambit62 Administrator in reply to WIZARD6787]

The psychiatric effects of B12 were discovered in the 1960's when a psychiatrist was surprised that a patient responded to B12 given as a placebo on the way to enabling the patient to take drugs. B12 should very much be one of the things that is considered by doctors treating psychiatric symptoms.

[palmier]

How can medical professionals be unaware of how uncertain and reckless psychiatric diagnoses are when imposed on a patient against their will? If someone feels depressed and seeks help for that, fine, but when people seek for somatic symptoms and are dismissed as mentally ill, on what grounds, really??

Psychiatric diagnoses are rarely falsifiable. For the sake of argument imagine a doctor whose patient complains of tiredness. The doctor may think symptoms consistent with iron deficiency, take a blood sample and rule that out. Likewise the doctor may think symptoms consistent with hypothyroidism, take a blood sample, and rule that out as well. Next, the doctor may think symptoms are consistent with depression. But now there is no objective test to rule that out, so the patient may be labeled depressed, given antidepressants and no further investigation, even though it may be completely wrong.

My point is that symptoms being consistent with something doesn't always mean that much. That on it's own can't confirm a diagnosis. So why can't doctors consider the serious harm done when uncertain psychiatric diagnoses are forced on someone seeking for something else? First of all, do no harm!

[Narwhal10 in reply to palmier]

Psychiatric diagnoses are wildly inaccurate. Please know in 1973, David Rosenhan, a psychologist proved this very point. He conducted an experiment where sane and professional people pretended to have auditory hallucinations. All were detained in psychiatric hospitals and received treatment. After the experiment, Rosenhan explained to the psychiatrists what he had undertaken. They refused to amend or believe him. They maintained that the pseudo patients who were scientists had ‘schizophrenia in remission.’

Rosenhan conducted yet another experiment with the psychiatrists’ knowledge. They had to identify patients who had real MH diagnoses and those that did not. Again, psychiatrists failed badly. Thus, proving again the validity of the MH diagnoses. There are no blood tests nor investigations. It can take a psychiatrist just 5 minutes to diagnose and that diagnosis takes on a life form of its own. Plus, more are added. People collect them. Plus, medical staff believe the patients’ very real symptoms are a manifestation of their poor mental health. It is called Diagnostic Overshadowing and it is a form of discrimination.

The Medical Records are kept separate in a totally different database where psychiatrists have absolutely no access to them. Just one of the hundreds of thousands of cases is one poor woman was misdiagnosed with Major Depressive Disorder. Antidepressants were not going to work for her. She died of ovarian cancer. It had metastasised before they found it.

Another man whose radiotherapy made him confused was detained and had ECT. He merely had bowel cancer and was severely constipated. The toxins from both his radiotherapy and the leeching of his own toxic waste made him disoriented. He just needed some laxatives or at worst an enema.

Kamran Abbasi, the Editor in Chief of the British Medical Journal, writes extensively on the ‘over diagnosis’ of psychiatric disorders. If a doctor diagnoses one, it means they do not have to investigate any further. It saved them money. They also get nice bonuses and awards from the drugs companies. GSK plc are up 0.15 % today. It is just trends and business. Most people do theirs on the golf course. Plenty of links there.

🐷

[WiscGuy]

I hadn't recognized until now the correlation between B12 deficiency, inflammation, and headaches/brain fog.