Nine months since I started injections, 7 months of daily injections, methylocobalamin. Since i started injections end of May 2020 I have gone to a gluten free, dairy free and organic diet. Physical symptoms have improved but as title, brain fog, cognitive issues, tinnitus, dizziness and grogginess in mornings has not improved at all. My bloods are really really good apart from initial low b12. I never drank alcohol nor took drugs. Yet I am basically a mental cripple, and I feel I am just stealing oxygen from everyone else. I absolutely love life yet I go to bed every night praying I don't wake up. 24 hours a day seven days a week of brain fog, I just want a break from it. I am doing everything I can to heal yet the symptoms I hate the most just don't improve.
Brain fog, memory, cognitive processe... - Pernicious Anaemi...
Brain fog, memory, cognitive processes. Why zero improvement?
I'm sorry you are not making more progress.I can empathise.
I often wonder the same. Am doing everything to try and move forward and get some of my life back.
Sounds like your mental health is declining . Have you seen the doctor.
Although I realise so many are 'out of their depth' they can help with symptoms.
I've collected anti depressants twice and paid for them . I then decided I didnt need them.
They can be helpful for many short term. A friend recently recovering from covid using them short term .
If you've considered medication and dont think it's for you try and find another way.
Dont push.
Walk a little.
Just sit in a park
Try and think of what you can do
I had a junnk food day recently in protest to all the care and attention I usually take .It was a home made burger with home made relish. However followed with cake .Cake I find a comfort .
Treats are good . I got my most miserable when I couldn't eat proper food after a tooth extraction.
That feeling of hope then disappointment on waking I think very common with any chronic condition.
I look forward to my main meal every day.
I yearn to watch a film or a bit if tv.
I'm trying g not to yearn now but to accept for now I cant.
All very difficult.
Do speak to a doctor
Or close friend or a stranger .
Help can come from the strangest places.
I hope you are making tiny improvements that you've not noticed .
The medics might be missing something too. I think that at times
Keep going.
Plodding on hoping for some change is good. It can happen .
Be kind to yourself.
Glad you posted
Good morning Phil have you tried seeing a neurologist ? That may be a good option for you it never hurts to have another opinion.I’ve been a year S.I myself now and right now I’m having some crap things to deal with myself it’s like being on a bloody roundabout.I’m going to have to bite the bullet and arrange this private neuro appointment he’s just been waiting on me to confirm a date I’m happy to go,it’s the oxford consultant,I’d delayed because of Lockdown but I’ve had two days of bad head pain right up behind my ears feels like everything radiates from my spine so I know it’d be sensible thing to do now.
I still have a lot of neuro issues but I also check my tick list and see that I do have a lot of improvements,it just seems to be a slow process for a lot of us.
We may never be 100% again but any improvement however small has to be a step in the right direction in my view.
All you can do is keep plodding away and come on here for some support,we all have to do that at our lowest times and thank god we have that choice.
There’s lots of other support choices on health unlocked ,go to the home page and have a browse,it really is a great platform for us ive joined a few now.best of luck
Really sorry to hear what you are going through. Definitely make sure you see a neurologist.
Please don't go to bed praying you won't wake up. Do this meditation before you go to bed each night. It will make a difference. youtu.be/EwQkfoKxRvo
Thank you very much for all the replies. My life has basically been decimated by this illness, I had visited the doctors 20 times over a 2 year period and was just met with typical stress, depression and STD checks by the doctors. In Oct 2019 I was picking out engagement rings and discussing weddings and 3 months later she ended it due to 'Not being normal' her words not mine. I was diagnosed June 2020 with PA and been on injections since. As mentioned previously, I have completed overhauled my diet and am doing everything I can to assist with my recovery. I am currently on the waiting list to see a neurologist, however, I fear that they may find severe damage and start to prescribe me medication which will affect my recovery and also just increase my stress.
I used to be super alert and had so much energy, I could teach all day, play a round of golf in the evening, cook my tea, and cycle 11 miles in evening. Now, I cannot do anything at all. I am basically living like a zombie. I am currently doing a 2nd Masters for my current role which I am struggling so much with as I mentally at 5% of what I used to be. I am only managing to stay in my job due to covid as last several months we have not been able to visit places for my job. However, we have now been told that we can start to visit and I fear I will not be able to do my job. I have moved from being outstanding at what I do and full of energy to basically a mental and physical cripple. I cannot see anyway how I can work and feel that I will have to quit both my job and my masters.
B12 deficiency can be horrific and can take time to heal. Other vitamins/minerals like folate, vit D, magnesium and calcium may be beneficial for this healing, but shouldn't be overdone. Have your vit D and folate levels been checked?
I have experienced a bad reaction with Methylcobalamin when taking the injections very regularly as you are - some of my symptoms seemed to get a lot worse. Perhaps try Hydroxocobalamin, see whether that works better for you? Hydroxocobalamin is known to stay longer in the system as well, so you may not need such regular injections.
Also, what was the reason you ended up injecting every day? Do you feel it works better than every other day, or every three days? It's worth checking.
Am also wondering why you stopped dairy and gluten? Unless you have some other issues or allergies, would suggest it's important to have a varied diet. You may not be able to absorb any B12 from dairy, but it is very nutritious in other ways.
Take it easy. Make sure you get enough sleep. Give your system time to heal.
Also, trust that the neurologist will be able to support you. There's no reason to think they would prescribe meds that would make it worse. Mostly neurologists are quite helpful and know better about B12 deficiency than other docs.
Regarding other vitamins and minerals:Folate - In May 2020 it was 9.9 but in Nov 2020 it was 22
Ferritin - Aug 2019 it was 72, then May 2020 was 53, Nov 2020 it is 48 (currently been taking iron tablets to increase - for 1 week and top Vit c Power to help.
Vitamin - Aug 2019 (no supplements was 96) Nov 2020 it was 225 on supplements
Magnesium - steady at 0.87
Calcium - may 2020 it was 2.39 and Nov 2020 it was 2.38
ERS - range is 1-20 (1-7 really accurate) mine is 2
C reactive proteins range is 1-3 mine was less than 1(which is good especially with an autoimmune disorder like PA.
Hi Phil, I have deep empathy. My quality of life after PA diagnosis and then B1 deficiency diagnosis has drastically declined in less than one year's time. I was a healthy and vibrant person this time last year. Then multi-nutrient deficiencies annihilated my quality of life, and it took a long time to get answers. I started B12 injections in June 2020, and they helped, as I was dealing with severe nerve pain, POTS, GI issues, neurological symptoms, and crippling brain fog and anxiety. I was passing out, had periods of total body numbness, and constant paresthesias. Some improvement occurred, but as time went by, I began to suspect something else was at play. In November 2020, I was diagnosed with beriberi disease due to chronic thiamine/B1 deficiency. I began thiamine treatment with a form called TTFD, and it totally changed my life for the better, eliminating many of the lingering symptoms. TTFD "woke up" my brain, and I finally felt like myself again. Unfortunately, I had another downturn in late December that no doctor has been able to get to the bottom of, but now my brain fog is so bad it feels like a form of encephalopathy. I, like you, loved life, but I go to bed each night hoping I won't wake up. It's been excruciating to cope with this level of suffering. I don't want to die! I want to live! But it's like having a fire in my brain, and all I can think about is how to extinguish it. I feel like your words could have been my own. Perhaps, get your thiamine level checked. B1 deficiency is much more common than doctors realize. If you can, get a lab called TDP with liquid chromatography, (also called whole blood thiamine), as it's a better indicator of how thiamine is being used in the body. For people with these kinds of symptoms relating to the nervous system and brain, I think it's so important to get all the levels of Bs checked right out the gate, but very few doctors will do this, even upon patient request. I had to visit dozens of doctors and specialists before I got answers. If your doctor won't do the labs, trialing thiamine in any form might be helpful. The TTFD form is sold under a brand called Ecological Formulas - Allithiamine, and another called Thiamax. The TTFD form is superior in that it crosses the blood brain barrier more effectively than regular B1. When taking any B, it's very important to take a complex, as they work together. In the case of B1 supplementation, it's crucial to take equal amounts of B2, as B1 in higher doses will deplete B2. That is one theory my doctor has about why I went downhill in late December - it was discovered my B2 was critically low. Magnesium is very important as well when taking thiamine. I hope you can find some answers. Sometimes we just have to keep putting one foot in front of the other until a door finally opens. You're doing the right thing by overhauling your diet and cutting out gluten and dairy. They tend to be the most inflammatory foods. Probiotics and working on digestion are key too.
same here PhilAB .. what are your current symptoms? do u have any chronic infection like tonsilits , arthritis etc..
Main Symptoms
BRAIN FOG
Tiredness
Groggy in mornings
Tinnitus
Cold hands (feet used to be cold but so much better)
Cognitive issues - Memory, concentration, vision, motivation, really struggle to grasp concepts I am working at 5-10% of my mental ability.
Struggle with stress
Weak bladder - some days better. (really weird if I drink a pint of water it can go through me, but if i drink when in a hot bath it doesn't)
Obsessive thoughts
My daughter did her masters part time over 2 years after losing het teaching job. She managed and got a distinction.
There are ways.
She loved her job but unable to do it had to make adjustments and choices.
She also was full on and worked as a Samaritan. Was a college warden as well as a full time job. Ect ect .
Health has to come first.
You have to find a way forward in small steps.
You sound overwhelmed.
You need to make some choices. Break it down a bit.
I feared what a neurology would find too
Try and break things up a bit.
The neurologustvis more likely to eliminate things at first.
I hope you find a way of getting through.
It is early days .
He neurologist said to me . No quick fix it will take time.
Go back to the doctor.
I have got a 1st class degree and a distinction at Masters level, I wrote a 28000 word dissertation in 10 days and got 85%. But that was 16 years ago.I am currently doing a Masters for my current job, which my work is paying for. So, I cant leave my job a linked to my Masters. I am struggling with basic things. It took me 8 weeks to write a 4000 word essay and I got the lowest mark i have every got in my life.
My B12d has really hit the mental side (brain) rather than physical.
Physically, great improvements, my 3 year back, knee and shoulder injuries have completely healed. My muscles which used to ache ALL the time have dramatically improved, nerves in my hands have really healed (my little finger and wedding ring finger on left hand used to curl up and touch my palm in a relaxed state.
It is mainly brain fog where I feel like I have not slept for 3 weeks and terrible concentration and ability to mental tasks are my worst symptoms.
So good so many improvements have happened in a relatively short time with this condition. You have come a long way.
My daughter has a first too and a distinction in masters ect and a very bright mind.
She also has come a long way .
It has taken alot longer though.
Her masters was originally linked with her job.
She coukdnt do both though.
Hence giving you that example of doing it over 2 years overtime .
I was trying to highlights the positives for you.
I'm glad so many improvements have happened for you.
I'm making improvements but ar a slower pace.i asked at what % did a closes person think I was running at compared to my 'old's self The answer was very quick. 20% . So frustrating isnt it.
I'm sure more improvements can happen. More time and patience and help with the things you need.
Take care
So sorry to hear of your sad story. My life has had similar high points followed by lows that I now know were caused by B12 deficiency. As your relationship has failed recently it may be that at least some of your present experience is due to this. It may indeed be reactive depression and as such is a perfectly normal response to such a massive loss. You might find that regular weekly 1 to 1 psychotherapy with a qualified therapist would help you considerably. Personally I would not take any antidepressant medication - none of them helped me at all.
Yes, was going to say something similar.
Losing your partner, plus losing your health and losing your capacity is very difficult to deal with and it sounds like you are struggling with this.
Brain fog and cognitive issues can be caused or exacerbated by anxiety and stress. If these symptoms are not responding to the B12 treatment, then it is worth considering this.
Meditation, counselling, psychiatric medication... you have many options and it is definitely worth looking at this.
Have a degree and masters in psychology, I also taught A Level psychology for 18 years. I have a great understanding of all atypical disorders. I also paid alot of money to see 3 private therapists. They have no clue what this is like, so how can they offer help. I do suffer symptoms of depression, anxiety, paranoia and lack of hope. However, when I have a slight reduction in my symtpoms I can be dancing around the house. Like i said I love life so much, but this existence is not really living. I am a pale initation of what I used to be. I would say 5%.
With meditation you establish a bit of distance between what is you and what is your body and mind.
This is an intro to the meditation I shared above, which goes over this: youtu.be/K4hCvdDn7Zc
Also whatever state you are in when you go to sleep, it incubates within you overnight in a certain way, so it's important, if you want to be mentally healthy, to take a bit of care over this. Try this meditation every night before you go to bed. Just do it every night no matter what, involve yourself and follow the instructions as best you can. I'm sure you'll notice a difference. It's not going to cure damage from B12 deficiency, but will support you through the emotional struggles that come with that.
Hi, I’m the same. Been taking B12 for nearly a year but still have fatigue and issues. I’m currently working with a nutritionist who is checking my energy production. She has given me a new supplement programme including amino acids and lots of others. Will let you know if that works.
HiI felt the same as you, I too prayed not to wake up. I am 4 years post diagnosed and I am only just beginning to feel like the old me again. I still have an appalling memory but that horrible brain fog that makes you want to unzip your body and climb out to escape it (silly I know) has practically gone. I still have tinnitus and dizziness but I have menieres disease and put it down to that. I get breathless but think that's iron related which I also have a problem with. I definitely feel a lot more with it than I did but it has taken a long time. I know it may feel like you'll never feel normal again but don't give up hope it's early days but you will get there
How often you were injecting during those four years?
HiI had the loading doses at the doctors and the 12 weekly for a year and then they were changed to every ten weeks and are now 10 weekly.
HOWEVER IN ADDITION TO THIS
I started self injecting very early on with hydroxocobalamin
Every day for several months then every other day for several months and for the last two years or so twice a week which seems to suit, although if I feel I have over exerted myself or I feel rough then I will do extra. The main thing is not to forget even if you start to feel better.
I was and still am having the usual NHS jab
I had about 3 months of methyl injections. Twice daily.Did nothing for me.The .moment I switched to hydroxy I was noticeably better.
I did start on hydroxocobalamin for the first 3 months, my sister and mum researched and believed methylocobalamin is better i.e. Japan and Australia use it and they very pro b12. After my diagnosis my sister and mum found the had low b12 and both preferred methylocobalamin believing hydroxocobalamin made anxiety worse. I was alternating EOD between the 2 for a while.
Try just hydroxo- for a while...
My injections were stopped this year, I got really ill. When restarted was on methyl- but wasn't really working, making some things worse. Switched to hydroxo- and immediately things got much better.
(I had previously had no issue with methyl-, no idea why had issue this time, but the difference was huge and life changing)
I was on hydroxocobalamin for a few months, I feel no difference between the 2. Would I be fine doing hydroxocobalamin one day and methylocobalamin the next?
Not sure why alternating would help. If you want to see whether the methyl- is exacerbating some of your symptoms then I'd suggest stopping it completely for some time and start taking hydroxo- or cyano- instead.
Also, at the frequency you are injecting at the moment you have no way to tell what is helping, what is not helping and what is making things worse. So unless you are really really clear that that is how often you need it, then I'd also suggest trying a space between injections.
I took methyl- again yesterday to test whether was still having an issue with it. I didn't expect to as it has been a while and my health is much better, but I did feel strange afterwards, mildly struggling to think clearly. That could obviously be confirmation bias or a psychosomatic thing so won't draw any firm conclusions, but feel it's worth exploring, although obviously may not be your issue.
Hang in there. It’s the same road I’ve been on but now finally 4 years in and the dizziness and strength are improving. Make yourself move- walk daily. I found a resource I love. No Pain No Grain book and Dr Osborne u tubes Are educating me. Lots of things contain gluten that I wasn’t aware of. He thoroughly explains everything. Hope this helps🙏
I can tell you this, no way on gods earth I can put up with this for 4 years.
You may be luckier than others and not have to ??To me its reassuring that people gir their lives back even if it took 4 years. It happens so gradually.
Youve actually made some good progress in the 9 month timeframe.
Being able to work at all is wonderful.
I actually had a really good day yesterday, best I can remember. And it lasted all day. I have had good days before but generally only until 6 or 7pm. I have only managed to work due to covid lockdown as my work has us working from home. However, that has now changed and we are back to normal business now. I walk 3 times a day, although not far.
Thanks for the positive feedback regarding progress.
I can tell you that I suffered a reactive depression due to a relationship breakup many years before and everything you report was my experience also. You just feel as though you want to lie in the bed all day, go nowhere, do nothing and feel sorry for yourself. Suggest this may be your issue. I fixed it by consulting a doctor who prescribed a "levelling drug - can't remember the name of it- but it ironed out the highs and the lows and allowed me to function. It worked well but I think "living" is better than "existing" so eventually I weaned myself off it so I could once again "live" as such. That in itself was a signal of recovery. Just suggesting is all...See a doctor!
add methyl folate (not folic acid), b6 pyridoxine P-5-P and B complex and omega 3 with DHA. All brain boosters.
Food for brain
High homocysteine and low cholesterol predict Alzheimer’s
foodforthebrain.org/myths-a...
The H Factor -Why lowering homocysteine with B vitamins is key
foodforthebrain.org/the-h-f...
Homocysteine accumulates if a person is lacking in vitamin B6, folate or B12 and, to a lesser extent, the mineral zinc. This happens because these nutrients are required for a vital process called ‘methylation’ which, among other things, is essential to build brain cells. There are a billion methylation reactions every few seconds.
In this study the level of Hcy, above 9.5 µmol/L, correlated with accelerated brain shrinkage and cognitive decline.
Both high homocysteine (Hcy) levels, and low folic and B12 levels in blood correlate with increasing risk for AD according to a systematic review
Reduce high homocysteine via:
Methyl folate (0.8mg/d)
vitamin B12 (0.5 mg/d)
B6 (20mg/d)
Omega 3 with DHA
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