Lost in my brain: Hi, I am new here. I... - Pernicious Anaemi...

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Lost in my brain

Hi, I am new here. I'm sure my story is similar to everyone else. Misdiagnosed for 15 yrs. Last, 5 years, I started falling all the time, bumping into everything putting items in strange places with no memory of doing so I got tremors lost 30 lbs couldn't lift my head off my pillow for 4 months. I couldn't remember how to cook and couldn't follow the directions on a box. I kept leaving the stovetop burners on leaving my doors open and unlocked I became combative towards my boyfriend he kept telling me there was a serious problem, I couldn't see it and thought he was the problem my skin was whiter than paper the list goes on and on. I went to my Dr. and I freaked out in her office they started testing right away I thank GOD she is so smart she recognizes right away and tested my B 12 level it was 30 she said people in third world countries had more B12 than I did I now have permanent brain damage and on B12 shots every 2 weeks been on them for 2 years now somethings are better some are the same my heart palpitation is severe and my oxygen level is always way down. some days I lose all hope it feels like it will never get better my old self is gone my whole personality has changed its due to the damage in my brain I am in acceptance most days. I am hoping that joining here will give me understanding and some hope for my future. I want to thank you for being here and I am sure that I have taken up more space than I am supposed to.

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Hi, I am so sorry you’ve had such a rough time. I’m not an expert on PA and I’m still fighting to get my own B12d diagnosed. So I’m sure a more experienced member will be along to correct me if I’m wrong or give more sound advice.

I think you need to go back and get your GP or endocrinologist to change your dosage and timing of your shots, if there are neurological symptoms, I’m pretty sure you’re meant to be having the shots every other day until neurological symptoms go away, I realise you say you have permanent brain damage, but were you ever given your shots like this or has they always been every two weeks?? I’m pretty sure they’re meant to be more regular than that if your levels are so low!? Do you also take a good supplement with this too?? Like a high dose oral B12 spray? (Always better than tablets as it bypasses the stomach and therefore most absorption issues)

I hope someone will be along shortly to give you more sound advice, this is jus what I’ve read on here and advice I’ve also read on another ‘Topic’ thread on this forum (ThyroidUK)

Gentle hugs lovely. I am so sorry you were so poorly

Shelley x

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the first year I was injected every month then every 2 weeks and then every month again I went up to 1300 in my numbers and now I am down to 500 I missed two months of injections because I forgot to go get them my memory and reasonability is gone along with my personality.my brain doesn't work properly anymore Thank you so uch

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Your numbers mean nothing when you’re supplementing because the whole point is to get your numbers up and it’s not actually measuring the stuff that’s actually being used by your body’s tissues and cells!! xx

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To repair nerve damage, I’m taking folic acid, a daily multivitamin for the minerals and metals, extra B1, B6, and trimethylglycine (TMG) to control homocysteine.

Two tests to see if B12 is working are homocysteine and methylmalonic acid.

Nerve damage is permanent if the axon is gone. There is some thought that myelin sheath erosions can be repaired. One indication of nerve repair is that symptoms get worse for 3 to 4 days after the jab as the brain has to recalibrate to stronger signals like hunger, pain, headaches.

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My dear 15beansoup , I’m so glad that you have written in to this forum . You can find help

and friendship here . It will obviously take some time for you to recover as you have been deficient for so long . So don’t be impatient . I know that sounds ridiculous after 2 years of treatment , but you have obviously been deficient for longer than that . I can only suggest that you have injections every other day , until your symptoms stop improving , which your doctor may not be able to prescribe for you . But many of us get the extra injections we need by obtaining B12 ampoules from German online pharmacies . There is no problem with overdosing on B12. No prescription required in Germany , but in U.K. anything injectable is only on prescription-even saline solution ! Syringes and needles are obtainable in UK . Also make sure you have a daily folic acid tablet- say 400mcg ( vitamin B9 ) It works together with B12 . If you feel you would like to self inject -let us know , and you will get the information that you need . I must tell you that self injecting is cheap costing about £1.20 if you buy in bulk . everything included . So less than a cup of coffee in a café! It has really saved me . I could not get enough injections from my GP . I was also in a bad way with totally numb feet . and could not get a diagnosis . I went to a private GP and got a positive IFA test, which my surgery had to accept , but would only give me an injection every 3 months I now self-inject weekly . My life has changed . You have found the right place for help . You will get some more advice I’m sure . Very best wishes to you , and no, you haven’t taken up too much space . Welcome to our forum !

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Hi since you hav so much of knowledge about b12... can u pls tell that high levels of b12 in a mother can have an autistic child? As I’m on every other day injections my level is above 2000

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I think this has been answered ?? An article on The World Organisation has scared alot of women on this. I would speak to your gynoncologist or midwife. All I know is certain is defiencies cause big problems with the development of babies inutero TC

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What knowledge do u have about this?

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Only what I've stated. If you read back there is more on your subject from others . I hope you find the answers you are looking for

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The evidence for this is unsubstantiated, so you must not take it seriously . I do realise that is difficult if you are pregnant or wish to be so , and are taking B12 and folic acid in high doses to keep well ( you must take care with high doses of folic acid ) We have always been told that there are no side effects to high dosage of B12 .

Parents with autistic children are always very anxious to find a cause for the condition. I can understand that . Not so long ago it was reputedly vaccines . And so many parents then didn’t have their babies vaccinated . This has since been disproven . I’m sorry that I can’t be of more help to you about this . Best wishes to you .

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Thank you so much !! I don't know why but you have brought tears to my eyes and their falling like rain I am on shots once a month now and I cant tell that I've had the shot, never could, I see everybody talks about feeling diffrent I am on 1000 mg I believe I also take B1 and Vit D. I have severe allergic reactions to medications so I have to be very careful it has triggered a reaction to injections now, I pass out everytime they put a needle in me now which started after my 2nd shot they will not allow me to give my own injections. Thank you for yur responce and kind words I have a feeling I will learn alot from you.

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I really do feel that you should try injections every other day . That’s what you should have had from day one . I don’t think that you are on 1000 mg . I believe you mean 1000mcg which equals 1mg

mcg=microgram

mg=milligram —— I mg is the normal injection strength for B12

You do not have to take folic acid supplements if you are worried about a reaction .Just make sure you eat a good amount of green leafy vegetables . Peas are also good for folate ( called folic acid in a tablet ) Can’t imagine why you pass out when you have an injection . Do you get so wound up about it ? I had mine this morning -every Monday . It’s just a simple routine after 3 years . But the first time I self-injected I had to have a very large gin and tonic before I could take the plunge ! I live alone so I had to really grit my teeth ! It’s a scary thing to do for the first time ! Do you have a friend/partner who could either be with you or undertake to inject you ? I couldn’t inject anyone myself -I would be afraid of hurting them . You don’t have to give yourself an injection in the same way that you get at your surgery . They always inject into a muscle ( I.M.) You might find it more acceptable to inject sub-cutaneously ( sub-cut ) You use a much shorter needle for that method . You inject into your tummy fat layer , like diabetics do with insulin . Just relax and think about it all . Do not give up hope of recovery please . There is always some one at hand on this forum to reassure you . ‘Bye for now .

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trying to get my brain to work yes its 1000 mcg, it is not the needle going in but the fluid of any kind hits my system I pass out I underwent testing and it has to do with the adrenal glands if I understand it correctly it all started with the B12 injections then, to any fluid to my system, I had 1000s of injections and IVs and surgeries never a problem till I got PA and started the shots, was just diagnoised this week with diabetes and my DR. is terrified for me because of the injections they are working on a plan for me, there is a name for this I just can't remember it, my brain is not working properly this am

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I would read a book by Dr, Sarah Myhill - can’t remember the name of it . She gas written many books . She investigates cases that leave other doctors baffled .

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Wats ur b12 level now?

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this week it was 480, to be honest, I cant tell I ve had a shot except for my arm hurting for 3 days and feeling like I got the flu for 3 days after getting injection anything else and I feel nothing. I stay exhausted but I am out of bed I was bedridden for months, I know things are changing,, I just can't feel the things changing. I don't even know if that makes sense.

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Wedgewood- would you be able to point me in the direction of where I can source the B12 injections online please? I’ve found one website but it’s all in German, and that isn’t what it used to be when I first left school never mind now 🤣

I have so many symptoms of a B12 deficiency it’s unreal, it also runs in the family as does PA. I tested negative for the IFA though but I understand that, that is often the case.

I would just like to feel well again! Many thanks

Shelley x

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You really need a translation app or to use google chrome which will translate for you

I use bodfeld-Apotheke.de

Or

versandapo.de

On these sites search for Rotexmedica vitamin B12 depot . Do not forget depot because that will lead you to the correct type of B12 you want — namely Hydroxocobalamin I always look at both prices because they change from week to week. Courier cost about €9.00 no matter how many you order 1 pack or 10 . There’s been a run on them I think , because one of them won’t let you order more than 3 packs of 10 . ( Brexit panic ?)

Alternatively you can go on amazon.de

They have an English site . . The only trouble there is that some of the pharmacies will not ship to UK. You have to trawl through till you find one that does .

Hope that this helps

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That’s brilliant thank you. I think my problem was that I was using my phone which is safari. I’ll download chrome and try that. Thank you so much xx

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Is your b12 symptoms resolved?how long will it take to resolve and how do we know is the damage permanent?im v worried it’s been 15months to my treatment and I’m still fatigued,dizzy,tremors etc will they ever resolve

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No their not at this time,I feel good about not bumping into things a 100 times a day it's like 10 times now. I can live with that. My vision is a lot better I don't see everything sideways you should see how I used to park my car. People would say to me, why do you park that way and I would say what way before they stopped me from driving. My brain didn't recognize there was a problem. Everything seemed normal to me, My tremors stopped, my speech is back and normal, I no longer fall every day just sometimes now, which is great, the bad part is, I just don't know when their coming. My temperature gauge is working now. Cooking is still a problem, maybe with time. My Houston, we got a problem-button is still not all the way working. My O2 levels are way down, I have SOB, my heart palpitations are really bad, I used to run 5 miles a day and now I am lucky to make it to the bathroom. Yesterday I put my toothbrush in the toilet, my toothpaste in the freezer my remote control in the dryer. I can't imagine. what my brain is thinking when it does these things I only get upset when someone brings it to my attention, its like, hey I know you have cancer, but could you not loose your hair all over my house, type of thing it just can't be helped, maybe a bad example but I hope you understand what I am trying to say. I don't understand what motivates a person to make you feel bad about having an illness, I try and laugh things off, so I don't feel so bad, I already have so much guilt and feel like a burden, so that's one dept. I don't need help in. Wow, I drifted off sorry, anyway things are getting better, very slowly, 25 months into treatment. I wish it would all stop, but I know it can be worse, I've done the worse. Each day I hope for better !!!

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Hi,

I'm sorry to read you've had such a hard time en route to finally getting a diagnosis.

I can relate to the feeling of being "lost in your brain".

Treatment for B12 deficiency varies from country to country so sometimes it is helpful to know which country you are in.

Do you have a diagnosis of Pernicious Anaemia?

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

There are other conditions and problems besides PA that can lead to B12 deficiency eg poor diet, Coeliac disease, H Pylori infection, Crohns disease, fish tapeworm infection and others.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I was undiagnosed for many years...I still don't have a confirmed diagnosis but doctors have accepted that my symptoms were/are typical of B12 deficiency and that I respond well to B12 injections. I had to resort to treating myself for a period of time as I got to the point that I had dementia type symptoms and some spinal symptoms.

Years later after treatment started I am still improving slowly year on year.

I am not medically trained.

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Thank you for your response I feel overwhelmed reading your post made everything spin I think there was a question in there and a lot of info I am in the USA and yes that is one of my symptoms now not able to process information you seem very educated on this subject and I will learn a lot from you

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How often do u inject?

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once a month

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Hi 15beansoup

Having had two thirds of my stomach removed in 1959 at the age of 17 it was 13 years before I eventually go diagnosed with P.A. (which is just one of the causes of B12 deficiency) in 1972 by which time I was a "walking Zombie" and put onto four weekly cyanocobamalin injections.

There is life after B12d as I'm still "clivealive" aged 78 although at times I say:-

I'm accustomed to my deafness

And my dentures are just fine

I can cope with my bi-focals

But how I miss my mind :)

I wish you well and hope you will soon be feeling "Normal" again. Take care.

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Help and welcome to this forum.

I hope by sharing your symptoms you don't feel so alone

Like others have already said more healing is possible.

I'm in a slump at present.

When you say you have lost your old self I think its something illness does to everyone in different degrees at different times.

An emotional roller coaster.

Do you have a reaction to your b12 injection. It will still be working g on repair just not in a linear line.

That's what I'm hoping. Perhaos make a list of where you started and where you are now. It might help you see the improvements made however slow they have been.

Glad you have made contact

TC

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Sorry typing error.

Hello and welcome!! (that should have read)

I make loads as eyesight poor!!!

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Hi,

Some people on the forum keep a symptoms diary of how their symptoms change over time with treatment.

It took many weeks for me to see any improvement in symptoms when I first started treatment.

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You deserve all the space in the world and sound pretty smart to me, wishing you all the best.

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I am horrified to read of your B12 level and the inadequate treatment you're receiving. My B12 level was 150 for at least four years before anyone noticed. After 2.5 years of treatments which yielded very little in results (injections varying from once every three months to every other week at the doctor's office), I began giving myself subcutaneous injections every 2 to 3 days about 5 months ago. Finally, I am living a nearly normal life (with an occasional "bad day"). Since you can't give yourself injections, may I suggest B12 in liquid form? I find that the injections alone cannot keep my symptoms under control, so I also use GNC's liquid B12 1000mcg, 2 fluid ounce (60 servings) in cherry flavor. (Link: gnc.com/vitamin-b12-cobalam... I started using the liquid when I was receiving injections only once every other week, and the liquid made a huge difference even before I upped by injection frequency. I don't know why the combination works, but every time I forget to use the liquid I find after 2 or 3 days that my symptoms have returned. Although my brain is much improved, in order to be sure that I don't forget to take it, I have a small sign hanging in my kitchen asking "Did you take your B12 today?". The liquid has proven to be so critical to my health that I stop whatever I'm doing to take my liquid B12 if I haven't yet done so. I am in the U.S. also, and I just placed an online order at GNC.com for the liquid at 9.99 a bottle, currently "buy 3, get 1 free" with free shipping on orders over $40. A serving is a dropperful, and I dose myself with 4 or 5 servings 2x a day, so a bottle lasts about a week. For $30 a month, I can think clearly and I can exercise somewhat vigorously. My muscle cramps, headaches, etc, etc, etc remain under control (with the exception of an occasional "bad day", the cause of which I've yet to figure out).

I'm so sorry that you have had to deal with this and are continuing to deal with it, but I urge you to find a way to get more B12. Perhaps your doctor can be persuaded to go to an injection every other day, but in the meantime, I'm hopeful that the liquid will be as helpful to you as it has been to me.

Jayne (Dopey,Grumpy,Sleepy)

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So sorry to read what has happened to you.

I agree with others you need to be on injections every other day . I inject every day now as I have tremors and its only with daily jabs that they have improved.

Have you tried subcuatanous injections of b12? The b12 is injected into the fat of your tummy or thighs. It takes a few hours to get into the system and is a less deep injection. Im just wondering if your body would react less to such an injection. I inject the night before to get the effects in the morning.

Please dont give up there is much hope for improvement. I had my tremors for years but no one thought of it being due to insufficient b12. Ive been injecting for 11 months and the difference is amazing. Like you I think its likely that my tremors wont go all together and I probably have permenant damage but it will be another 2-3yrs of daily treatmdnt before I will know this. Repairing from b12 deficiency can take a very long time.

Others on here are far more knowleadgeable and can advise you further.

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Hi there, so sorry to read your terrible story, I too have PA which was undiagnosed for 7 years, fortunately I haven't suffered the damage that you have. Your story reminds me of a documentary I saw about an American doctor who was so ill with PA he ended up unable to speak or walk and was at death's door until a doctor recognised B12 deficiency. Today he walks with a stick but he has regained all his mental faculties and is working again as a doctor. Take hope from this, I'm sure you'll bounce back too. If you can't self inject perhaps you could speak to your doctors about upping the frequency?

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Link to film which I think mentions that doctor.

b12deficiency.info/films/

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Hi, I am sorry to hear you have suffered so much. And it's not your fault! No one has the right to judge you because of an illness. But so many people don't understand PA and B12 deficiency, and the problems it causes. I used to have brain fog, anxiety, tear jags, and some of the symptoms you describe (putting things in the wrong place, bumping into stuff), and extreme fatigue. I thought it was "me" until I learned about PA and was diagnosed.

Like others here, I believe you would do well to have more frequent injections of B12. Like you, I'm in the USA and found it's hard to get doctors to understand the importance of getting enough B12 to repair damage, if possible. I am now seeing a naturopathic doctor and she has helped me a lot. I get an injection of about 1.5mcg every 3 days, it has made a huge difference. I bump into things, drop things and forget where I put stuff on the day I'm due to have an injection, but the other days I have a lot of good energy. So our bodies tell us when we need more. I suggest insisting to your doctor that you get more frequent injections until your symptoms improve. And surround yourself with people who lift your spirits, make you laugh, give you the affection you deserve. Hope this helps!

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Thank you so much for your kind and helpful words.

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For how long have u been on treatment? R u getting better

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2 or 3 yrs now don't remember when because my case became so severe I had to have a full-time caretaker. my memory is gone, also the way I perceive things are screwed up too. PA is a horrible disease that if there was more education so many people could be spared. I think there should be pamphlets in every Dr.s office in every grocery store in every vitamin aisle to inform people when I talk to ppl they never heard of this disease and what could happen to them most people have never heard of Vitamin B 12

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