Seeking help

[Nana321]

New to site. 57 yrs old. Last year GP said b12 level was 52. I was so tired I could barely move. Lightheaded. Nauseated. Irritable. Ordered injections weekly x4 then monthly. Slight improvement. Now weekly injections but still not well. I thought I was losing my mind. GP unconcerned. Ordered MRI. Cost tons of $$. Nothing found thank goodness but I don't think my GP has a clue. My life has changed completely due to symptoms. Any advice is appreciated.

[B12life]

I summarized the facts In This article in a cover sheet and give it to my docs. One of them being that you need more frequent injections based on symptoms when neurological symptoms are involved.ncbi.nlm.nih.gov/pmc/articl...

[Nackapan]

I'm sorry to hear this.I was your age when finally diagnosed.

I'm convinced the menopause was a trigger.

Keep going with your regular b12 injections.

Get bloods done to monitor iron ferritin vit d folate.

When you cant absorb one thing others csn follow

I was told early on after my Mri scans were deemed okay. . It would take time!

The medics have a poor understanding.

I'm labelled with chronic fatigue . Thars a symptom not a diagnosis

I csn only say I've a strong will but have learnt I cannot 'push through

I have to to a certain extent when feel glued yo the chair.

But I've tried very hard to do more walks get on my bike

I just seem to crash with horrid head symptoms fatigue of the sort that hives nausea.

So you almost have to relearn the body in its present working order hoping it resets itself.

Hopefully you will start to function better soon.

Learn the word no.

As invisible and you can try and act your 'normal' I've had to learn. No to alot of things my friends think I should do or want me to do as I used to.

They see me in a 'window' not out of it .

I'm sure this I'll make senses to you TC

[Nana321 in reply to Nackapan]

Thank you for your input. I'm so happy I found this forum. I felt that I was alone in this and was really afraid it was "all in my head".

[Nackapan in reply to Nana321]

The like button not working .No not all in your head !

[B12life in reply to Nackapan]

Nackapan. so true!!! i feel the same way! no one gets it.

[Cherylclaire Forum Support]

I was also 57 when found to be B12 deficient. I'm 63 now.

I don't feel like I'm slowly dying.

I don't need an afternoon nap or 15 hours' sleep at night.

I don't feel like I'm going mad.

I don't smell odours that can't possibly be true.

Not everything feels like a huge chore.

I can do a supermarket shop, I can walk without thinking about moving my legs, and I can recognise, by and large, what I am able to do and when I am able to do it.

What I can't do is anticipate this - even now I don't always know what is going to drain me in advance.

So I live very much in the moment and don't plan unless I can't avoid it.

The other thing I can't do is go back to work- so I took voluntary redundancy.

A huge amount of symptoms have improved or are rarely a problem, but my short-term memory is still appalling and although cognitive issues have improved, I can get confused especially if multi-tasking. Sometimes TV just takes too much mental effort, particularly holding onto information about characters and plot until the same time next week ! My books are sitting here collecting dust for the same reason.

Slowly working through something start-to-finish and concentrating without any distractions is easier so I have spent more time painting, which makes me happy.

I really need a shed.

Stress is difficult, and just having to pretend to be as you were takes a huge amount out of you. It helps to have an inner circle ( friends, workmates, family, partner) who do know exactly what you are going through and can take some of the pressure off you. It helps to have a GP who you can be honest with as well.

Take it easy and be kind to yourself- don't feel that you are alone. There are many good, helpful, supportive people here who know how hard this is. It will take time to get better.

Like Nackapan said - get folate, ferritin, vitamin D and thyroid checked too. Healthy levels will help- not just within range.

[Nackapan in reply to Cherylclaire]

So same age as me and Nana321! Interesting.

It's lovely to hear the things that you csn do now.

Also at peace with other things that come and go .

An inner circle is definitely the way.

.

Also living in the moment very good advice

I had 2 hours of feeling i wish I could bottle now. Even with the limitations I have I could cope if it stays like this.

While it's changing there is hope for improvements .

My short term memory was appalljng today.

Seemed to just drift through.

Yes take it easy and be kind to yourself.

I say that too.

So we must all try and do just that.

[Cherylclaire Forum Support in reply to Nackapan]

We probably have the same conversation over and over endlessly- the good thing is I won't remember I wrote it and you won't remember you read it !

[Nackapan in reply to Cherylclaire]

🤣🤣I think it's like PTSD yoh have to keep repeating it to make sense of lost years and do remember a bit more as well as so much went on.

So true not remembering youve said it or read it

A bit of 'normal ' old age perhaps as well (speaking for myself of course)

I remember my dad repeating himself as I do now.

Giving the same reply to irritated listeners.

"Better said twice than not at all."

[Cherylclaire Forum Support in reply to Nackapan]

....and better to be around to irritate listeners than the alternative !

[Derz]

It's the same story with everyone of us...GPs neglected the issue. From my personal experience I can only advise you to start taking B12 methylcobalamin sublingual liquid. Hope it's helpful.

[Sleepybunny]

Hi,

I'm sorry to read that your doctor doesn't have a clue. I'd like to say I'm surprised but sadly I'm not.

I'm in UK and was left by the NHS to deteriorate for years despite typical symptoms of B12 deficiency and got to the point of dementia symptoms, multiple neurological symptoms and some spinal symptoms.

The hardest thing I had to deal with was not the "too many to count" symptoms affecting every body system but the ignorance about B12 deficiency and unkindness of many of the GPs and specialist doctors such as neurologists I had contact with.

All except one missed what was staring them in the face and the neurologist who thought it might be a possibility was not able to give me a confirmed diagnosis.

I did at one point get one set of loading injections due to a low B12 result but was told I didn't need any more as my B12 results increased to within range and stupidly I believed them.

I continued to deteriorate and became concerned that if nothing was done I was going to become demented, paralysed and possibly die far earlier than expected.

In the end I learnt a very hard life lesson and that was that the only person who was going to help me was myself. I put my detective hat on and started googling all my symptoms and narrowed it down to about three possible conditions including B12 deficiency.

I had tests to exclude other possibilities and was left only with B12 deficiency. I then started a fight to get treatment but was refused on numerous occasions. Eventually I was forced to treat myself.

I did eventually get some treatment on NHS. I now have a life I can enjoy although it is not the life I expected and I suspect I have some permanent damage due to the length of time I went untreated.

"was really afraid it was "all in my head"."

I empathise with you....there are far too many forum members who have been labelled in past as hypochondriacs, having psychosomatic symptoms and other misdiagnoses such as ME/CFS/Fibromyalgia or in my case...all of the above.

You know your own body and when it isn't working as it should.

Misdiagnosis of B12 deficiency as other conditions

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

[Nana321 in reply to Sleepybunny]

I'm so relieved. My family is great but they can't understand why I'm not the person I used to be. I look the same but am not the person they've always known. Because it's not cancer or something that they're familiar with, they don't understand. My GP, who treats the entire family, doesn't act like it's a big deal so this confuses them more. I have truly become another person. It's scary. Just finding this group has been eye opening for me. Many thanks to all responders. The insights, links, articles have been so helpful. I have a new hope that I can do this. Be kind to myself was what I needed to hear. Thank you again.

[Sleepybunny]

I've put a list of useful links about B12 deficiency on your other thread.

"Ordered MRI. Cost tons of $$. Nothing found thank goodness "

If you have the time and energy, might be worth reading any report that was written after the MRI.

These days I don't accept what I am told by doctors unless I have evidence that supports what they have said. I was told in past on more than one occasion that my blood results were all normal and found abnormal and borderline results when I got copies.

Was the MRI of your head or spine?

B12 deficiency can sometimes be associated with lesions in white brain matter.

Article is aimed at researchers and health professionals.

May have details that could be upsetting.

ncbi.nlm.nih.gov/pmc/articl...

B12 deficiency (and sometimes folate deficiency) can be associated with an increased risk of damage to the spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

I am not medically trained.

[Chucknz]

And it's not just a UK experience, I have supplied my quack with video links but he never has TIME to watch them. Chuck NEW ZEALAND