What would you do...?

[Poppet11]

...if you discovered: that because no one understood that b12 deficiency caused neuro damage first - firmly believing the modern myth that it caused anaemia and once anaemia was rectified all was well - the rumour was consistently and widely spread that you were not ill? Bearing in mind that you had never claimed a penny in benefits because the doctors were of the same mind even though you'd got extensive evidence of muscle damage, Raynauds, and an autoimmune condition?

[FlyGranny]

Educate, educate and educate those around you!

[Poppet11 in reply to FlyGranny]

You can't - they won't listen. When I tried to explain before my family tried to get me sectioned.

I think now things will change because you can put the BMJ stuff in front of them that basically says - b12 deficiency does not start (and end) with anaemia. But it was actually dangerous to mention it prior to this.

[FlyGranny in reply to Poppet11]

There is a dvd that the PA Society puts out called "The Fog". I ordered it and showed it to my husband. I think it somewhat really helped him to understand what I go through even though I don't often talk about it. Maybe that would help with family members at least. Good Luck!

[Poppet11]

I did buy it. I showed it to my GP and my family. It caused more trouble. The belief now is that problems, if they exist, are related to mental health. Which is not much help considering my problems were founded in the physical - which is what I was trying to get everyone to understand.

The Fog is only the start of this illness - and I think many people don't realise this. For many if they start treatment (even the rubbish treatment by the NHS) after they get the fog, then it slows the degenerative processes down - even though patients still feel foggy and ill. But if you didn't get treatment when the problems started to include neurological damage and that damage was allowed to become permanent, then nobody believes you when you tell them that - because they only see people with The Fog. They think the neurological damage is imaginery.

And it's not. The new BMJ article is going a long way to prove that.

[Leilanilea in reply to Poppet11]

If you're a woman and docs don't know how to "cure" you, then obviously you're depressed! Or perhaps anxious -- anything they can throw a pill at or use to refer you to another specialty.

In the 1960s Valium (diazepam) was prescribed to so many women that the phrase "Valium deficiency" was coined.

"Mother needs something today to calm her down," goes the 1966 Rolling Stones hit "Mother's Little Helper." "And though she's not really ill, there's a little yellow pill."

It's just endless, isn't it?

[Poppet11 in reply to Leilanilea]

Absolutely!

I think you've hit the nail on the head. I've said all along that this is just as much a reflection of society's attitude toward women as it is a reflection on the problems within medicine.

The worst part about it is that much of the attitude comes from other women.

Yet it doesn't matter who you are, what you achieved and how you were before you became ill - once you hit a certain age you become a paranoid emotional hysteric (except of course unless you are a female doctor!)

I also wonder how many of the problems relating to b12 deficiency have been mistaken for women going through the menopause. All the hot flushes, agitation, etc. Makes me wonder just how real the menopause is?

[Hidden]

Look after yourself Poppet, and look forward to a good, happy, and enjoyable life.

PS.

You could sit down and write a book, about B12, a simple and factual guide, so others can follow.

Manukia xx

[wedgewood in reply to Hidden]

I second that!

[Poppet11]

Thank you.