A Good Result

[Narwhal10]

Dear All,

 I know we have all suffered and some of us still do, with really severe symptoms and circumstances.  I am thinking especially of you, Sallyannl. I manage fatigue, a pain score of 10 out 10 in certain areas every afternoon/eve and muscle weakness BUT I believe in all this hardship it is important to have something positive. 

I am not very good at selling myself. If I did not have P.A./B12D, I would not have focused my studies in this area. I have finished my Diploma in the Gut-Brain Connection. I wrote many essays which aren’t my forte. I am motivated not only for my own health but for the community, we are poorly treated, misdiagnosed and for those who in the future will become symptomatic. 

I did pretty ok 😳 95 % (feel very awkward writing that).

It does not mean I know everything as that is impossible. 

Sending everyone my best wishes.

[Hidden]

Narwahl10, I cant thank you and everybody enough, with out you all helping me talk to people who understand would of sent me crazy .... which I am Not ... Its the frustration of dealing with it all, and the very people who are entrusted to us via the NHS letting us down.

I am glad I have experienced the worst of this, with my mum, and my self but that doesn't mean I do not feel the pain he is suffering. It might not be the pain Physically but I still feel his pain.

God bless you all !

[Narwhal10 in reply to Hidden]

Of course, it must be truly awful and frustrating going through the whole process with your mum, yourself and now, with your partner.

The emotional pain is really difficult. To see and be with someone you love and care for can be demanding and draining. So, you Sallyannl must have support where you can to lighten in anyway, shape or form the burden.

P.S. We have special nerve cells called ‘mirror neurons’ so we can interpret others facial expressions, noises so know when they are happy, sad, in pain or unwell. So, yes you can feel your partner’s pain x

[Hidden in reply to Narwhal10]

Yes, I can tell ..... even the white lie written all over his face. 😂😂😂😂

[jade_s]

😂😂😂 we are all that lion! Love it!

Well done you, 95%!! 👏👏 You give hope to everyone who is afraid that was it for them, they'll never get better. I too once despaired. It's important for people to see it's possible, to have hope, a goal.

Thanks for sharing! Be well 😊

[Narwhal10 in reply to jade_s]

Thank you,

Oh Cecil (the lion) still needs to inject EOD to use his stilts, have the brain power and energy to be determined. 😂😂🤣

Hope all is well with you lovely woman.

[jade_s in reply to Narwhal10]

😂 This lion (I'm a Leo!) does too 😉

All well on my end, hope you are also well! You sound like you're in a good mood!!😊

[Narwhal10 in reply to jade_s]

Good to hear you are well.

I was a wonky donkey yesterday - ‘the crash’ occurs once a week where I just have to have a duvet day. But that is fine. 😃

[jade_s in reply to Narwhal10]

It's all good, one crash once in a week is a BIG WIN in my book Take care x

[Hidden in reply to Narwhal10]

I always called my bed my best friend, one D.DayIs better than 2 D.Days.

[Hidden in reply to jade_s]

That's why I am always playing "You"ll Never Walk Alone"

OK you may not be able to walk AT THE MOMENT,

But it goes on to say .... "WITH HOPE IN YOUR HEART"

Never give up.

(I am a LIVERPOOL supporter after all)

[jade_s in reply to Hidden]

Nice! 🥰

Lol i know nothing about the footy, I assume they're not doing too well??? 😅

[Hidden in reply to jade_s]

Jade won 9 -0 yesterday, did lift my spirits for a while.

I thought I might write a letter to Her Majesty the Queen, to see if she was on B12 Injections.

DIfficulty Walking and given up Booze.

What a wonderful ambassador to get behind a campaign to bring back B12 Injection in line with NICE guidelines.

[jade_s in reply to Hidden]

Go Liverpoool! 🥳🥳🥳

Huh interesting. DO IT! 😆

[EllaNore in reply to Hidden]

We do need someone like that to bring this to the light. I've actually been looking for someone famous who suffers this or loved one does. There has to be someone.

[Narwhal10 in reply to EllaNore]

I too have looked and looked, I’ve always loved movies so tend to go for actors. The only person I’ve found was Gunnar Nordstrom who died of P.A. He was a Finnish physicist and him and Einstein were in friendly competition with their theories.

I am a big fan of Melissa McCarthy and her cousin, Jenny McCarthy who is a model and actress, was married to a director John Asher. They have a son who was diagnosed with autism. Jenny put her son on a gluten and casein (protein in dairy) free diet, did some other complementary medicines including chelation (removal of heavy metals), multivitamins and vitamin B12 injections. Apparently, her son is pretty well !!

[EllaNore in reply to Narwhal10]

Wow Narwhal10, that sounds very encouraging for the autism.

I found that Mary Todd Lincoln. President Lincolns wife, died of PA but at that time thought she had gone mad. Now they think it was PA.

I love Melissa and I didn't know Jenny was her cousin. I know someone who had chelation for a blood issue. She had to inject her own Plasma into her belly daily.

[newlandvale in reply to Hidden]

I wondered the same thing - did B12 put her back on her feet?Great minds think alike!

[Twaddletop in reply to Hidden]

My wee Irish Granny used to always say that if any of the royals developed a condition, money would be thrown at finding a cure. A royal with PA might help n with the struggle which as we know is real x

[Hidden in reply to Twaddletop]

"My wee Irish Granny" I hear this with the lovely irish accent.

As for the Queen she might have the condition, we will never know, the queen mother did, but only revealed after her death.

[Twaddletop in reply to Hidden]

In my case, it’s a broad Glasgow accent, not as kind to the ears.I bet the QM didn’t have to put up with her GP telling her she’s only entitled to an injection every twelve weeks. She lived to a good auld age as has the Queen. Interesting! x

[jade_s in reply to Hidden]

Oh really, the Queen mother did??? I had no idea!!

[EllaNore in reply to Hidden]

Here you go Sallyannl🦋💙🦋

youtu.be/OV5_LQArLa0(Not working as expected?)

[Hidden in reply to EllaNore]

You made my day !!!!

Thank you

[EllaNore in reply to Hidden]

Your welcome. The video is great! It's the perfect song!!!! It's your song.

[Hidden in reply to EllaNore]

It's our song, anybody that wants encouragement.

Never seen that clip before.... bring back the sixties.

[Sleepybunny]

Congratulations Narwhal10.

Wonderful to read a positive story on the forum.

[Steph0077]

That’s a lovely letter Narwhal10 🥰 your a very kind person always there to offer advise, you Jade and Sleepybunny are always about helping others and your selflessness shines through 🌟even when your dealing with your health journey you forget yourselves and focus on what you can do to help other people.🤗

If the world had more of people like you in it, it would be far more wonderful place, thank you again for all you do

lots of love hugs and best wishes to you

❤️❤️❤️❤️❤️❤️🤗🤗🤗🤗❤️❤️❤️❤️❤️❤️

[Narwhal10 in reply to Steph0077]

Thank you Steph0077,

We are a community and I myself would have been totally lost without it. When I stumbled across it, nearly two years ago, I was given direction, practical and emotional advice. The support I have received has been invaluable, people gave me their time and energy. I am eternally grateful to them and am part of something.

So, it is my pleasure.

Sending love and hugs back.

❤️❤️

[Cherylclaire Forum Support]

You have done so well.As a student with B12 deficiency, there must have been plenty of times when you did not see how you could complete - let alone get 95% !

Martyn Hooper was a teacher before he got PA. He is now educating medical professionals, among others, about Pernicious Anaemia and B12 deficiency. On the Pernicious Anaemia Society website, there is a single page poster detailing how you could help, as a teacher, students who have B12 deficiency. I put this up in classrooms when I was teaching, so that the students could better understand my condition, and so that any student with the same would know that there is support available.

(A bit like wearing rainbow laces in your steel toe-capped boots on a building-site - a signal of support).

One of the things I most love about the people here - there is so much care, advice and kindness. However ill people are, they give back, whenever they can be of help.

And that is you in a nutshell - plus you made me laugh !

[Narwhal10 in reply to Cherylclaire]

Thank you Cherylclaire,

Everyone here knows the hardship we endure. It is a really great idea about the poster. I will definitely have a look at it. But as a student having that support is invaluable.

Erm, I was very fortunate many years ago to have a great tutor who juggled so much professionally and personally. They ‘committed’ to writing 2 sentences of their Masters dissertation a day.

I still ‘pace my days’ so, I paced my studies. I do own a t-shirt that says ‘Nerd’ as when I have reasonable cognitive function, my concentration levels are pretty good. For example, the whole Liverpool football team could come into my home and I’d be totally oblivious.

My satirical, quirky humour isn’t everyone’s humour but it keeps me amused.

Many moons ago, I programmed computers. I avoid most ‘techy’ things now and this is my limit 🤣.

Log in log out.

[Hidden in reply to Narwhal10]

Narwhal, You might be totally oblivious, but if I didn't pass out at the shock, I would welcome them especially Mr Klopp himself. Over 50 years along with the ups and downs, remind you of anything ?

you might of programmed computers (clever you) I am still getting my head around them ... If only I could ........ ah forget it I will get by.

Keep going you never know if those stillettos will one day coming in handy. Reach for the moon.

🌺☝️🌑🌒🌔🌕

[Narwhal10 in reply to Hidden]

Wouldn’t it be amazing 🤩 if your footie team just turned up at your home.

Gosh, computer programming - very boring and tedious. If you missed out a full stop or a comma in your 40,000 lines of coding Computer said NO.

I can liken it to P.A./B12 D; Doc, I want to walk across the room but my legs won’t do as they are told. I can’t find the right words, can’t remember how to pronounce words and my sentences are jumbled.

We are all on this journey, with our own little ways. Finding pleasure where we can.

[Hidden in reply to Narwhal10]

It's when you do hours of work, not doing a backup, and the system crashes. I suppose a bit like B12D. What's next on the bucket list !

[jade_s in reply to Narwhal10]

🤣🤣🤣🤣

[Twaddletop in reply to Narwhal10]

C’mon Narwhal, have you switched it off and turned it on again?🥴 Congratulations on your results, I don’t know how you did it. My once good brain has turned to mush. It must have been a struggle for you but 95% is a brilliant result. Well done you xx

[Narwhal10 in reply to Twaddletop]

🤣🤣😂 Love it - Roy from the I.T. Crowd.

Thank you very much. Yes, loosing cognitive function is really difficult and I do wish doctors would take P.A./B12 D more seriously. Our brains need oxygen and nutrients to function, ours have had a period of starvation to varying degrees and severity.

Yet, I doubt very much any of us have had any ‘Physiotherapy’ or rehabilitation unless of course you do it yourself !!

xx

[Cherylclaire Forum Support in reply to Narwhal10]

Right up my street.

[RAjos131950]

Well done xxxxx

[Narwhal10 in reply to RAjos131950]

Thank you. xxx

[EllaNore]

A big congratulations Narwhal10!! That is a very big deal and a score of 95! That is impressive. How wonderful to have that knowledge and be able to help others. Woo-hoo!! You go!!!

[Narwhal10 in reply to EllaNore]

Thank you EllaNore.

[Littlelodge123]

An outstanding achievement. Feel proud. You did it!

[Narwhal10 in reply to Littlelodge123]

Thank you Littlelodge123. ☺️

[jaybirdxNHM]

Fantastic, congratulations, it's a wonderful result. I really appreciate your posts. Thank you so much. Xx

[Narwhal10 in reply to jaybirdxNHM]

What a lovely reply jaybirdxNHM,

It is my pleasure. Xx

[Nana321]

Congratulations Narwhal10! Your advice has been very helpful for me, Thank You.

[3rdNettydoon]

Well done Narwhal10.