No hope☹️

[Gunj_redjem]

I’m almost disabled because of this deficiency have lost all the hope of recovering.. though having frequent SI I’m not working as I keep v unwell,especially some days go on bed all the time I need rest most of the time.. I’m 32 yrs don’t know how will I manage my whole life.. will I recover ever or b in bed all the time 17months to treatment have all the symptoms migraines, dizziness, memory loss, eye disturbance etc just a vitamin deficiency can make anyone so disable I want to live a normal life work like others get married have a family is it ever possible...

[Nackapan]

Please do not lose hope.

You have read on here it's taken years for some to get some life back on track.

List things you can do.

Distraction techniques can sometimes work.

I'm struggling too. I know it is hard.

Take care

[Gunj_redjem in reply to Nackapan]

Distraction techniques as in?

[Nackapan in reply to Gunj_redjem]

If you are able to read. Or listen to quiet music. Or do pysio exercises in bed. Write a poem. Write to friends. Cook when you can. Listen to others who have problems. Anything really you are able to do.

[Nackapan in reply to Gunj_redjem]

I'm sure you csn think of some

[Hidden]

Keep on injecting, it will get better - at least you know what the problem is, and that there is a fix although not a very quick or indeed easy one.

I felt similar two years ago when I couldn’t stand up or think straight - at 47 I had just discovered these groups and couldn’t even type my blood test results into a spreadsheet and I’ve been coding computers since I was 9 and the thought of not being able to do anything as simple as that scared me witless. I ended up scanning the results in and my brain seemed to cope ok with that so there must be some kind of left right brain thing going on when we are at our lowest on this horrible illness.

With time and over 1,000 daily or more frequent injections I’m almost back to normal, if not better than before because now lots of stuff from my earlier life makes sense - passing out for no reason as a kid, etc. and for me it all seems to be down to eating stuff with gluten in so I’ve removed all grains from my diet, lost 5 stone in the last 10 months and now doing the same for my 78 year old mother who’s housebound with bad leg ulcers from chemo back in Jan and she’s healing more quickly now with no grains and her nerves are beginning to wake up after a week of daily injections, we’ve just upped it to twice daily now, seems if you’ve been deficient for a long time the body will use what it can and pee out any excess so keep jabbing away!

It’s never too late and I for one am happier knowing what’s going on as I have all the tools now and no excuses to do the things I want to do and live the life I want to live... guess that’s more of a note to self there

[Hidden in reply to Hidden]

...forgot to say one of the hardest things I found at that stage was to not stress about stuff because stress is a big depleter of B12. I went through a lot of chakra cleansing and universe harmonics or whatever they are videos on YouTube but eventually I managed to get enough B12 in me to have the strength to notice when I started thinking low and decide not to and just chill and relax instead. Not easy I know but has to be done!

[Gunj_redjem in reply to Hidden]

So much of hope... u were almost like me before..pls after how many years you feel back to normal😊

[Hidden in reply to Gunj_redjem]

It’s different for everyone so I’m hesitant to say what it took me as I am still as I guess will always be on the road to recovery but if you manage to take control of your stress by doing what you’ve done already and notice it, then chill out with some music or if you can some time outside (I was too afraid to go outside for a while!) then it will come sooner for you. If you worry and are anxious it will take longer, so somehow you have to have faith in the injections and yourself and at some point you will look back and see how far you’ve come in such a short time. Best advice I had was to write a symptoms journal which I did for about a month or two and that helps not only figure out what is working and what is not in terms of supplements etc but also tracks progress and even now when I look back I am proud of how far I’ve come. For me, helping others helped me too and I learned a lot in the process, as well as it taking my mind off my own issues.

[Gunj_redjem in reply to Hidden]

R u working too... asking cos I mite also b able to work one day😊

[Hidden in reply to Gunj_redjem]

I am lucky in that I have my own business so I work when and where I want. Now I look back and see I built my business around my “illness” of being ADHD in a world mostly filled with “neurotypical” people which I just don’t fit in - I get hyper focus on specific areas I’m interested in, find it physically excruciating to do things I disagree with or don’t find that interesting or useful to the human race, and don’t have control over when any of this happens in the day - certainly not 9-5 anyway lol.

I discovered the ADHD stuff only a few months back and it’s another piece of the puzzle for me but now I see that clearly too and just got a good book The Drummer and The Great Mountain which has lots of info on how to organise properly and so on. But I’m only at this stage after going through and sorting out other stuff too, mostly trauma stuff which we all have and is passed down through generations - we live in a world of trauma! Gabor Mate is great on this, check him out on YouTube. Also I learned a lot from my gene data which I got through a 23andme test and discovered I had particular versions of genes which can affect my B12 depending on my diet and toxins, so changed my diet and got rid of all the chemical stuff replacing with as natural stuff as I could afford.

[Sleepybunny]

Hi,

Please don't give up hope.

Sources of support

UK

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham, UK

b12d.org/event

[Gunj_redjem in reply to Sleepybunny]

I can never reach PAS call as I’m in India

[Kish2929]

Don't give up. This is going to be a long journey. I am 32 and have neurological symptoms. But, I hope I will get better one day. Don't stop SI at all

[jarlethblue]

don't give up hope. it took a very long time to get this sick so can take quite a time to get better. I have been injecting once and even twice a day since last November and am only now starting to get my life back. You need to inject very often i suspect in order to repair the damage. big big hugs. x. J

[Gunj_redjem in reply to jarlethblue]

How often wud u inject before November and for how long hav u been injecting

[jarlethblue in reply to Gunj_redjem]

I started UK injecting about last August I think. Every second day but it was not enough. Now I am doing twice a day. X

[Aaro in reply to jarlethblue]

Do you take any co factors like folic acid or just b12?

[Woolyhead]

Do try to do some kind of leg exercises even if you’re in bed. I was diagnosed with Polymyalgia Rheumatica (PMR) nearly a year ago. The symptoms I suffered with that turned out to be PAS, not, as the doctor first thought, caused by the PMR. I’ve now been diagnosed with Peripheral Arterial Disease (PAD) which which my consultant suspects has been caused by months of inactivity, since I’ve never smoked, had a reasonably healthy diet in fact nothing can be pin pointed except the inactivity caused by the PAS. To be honest, the pain cause through the PAD is absolutely dreadful so do try to keep up with some kind of exercise to keep your blood flowing. It won’t be easy but well worth it.