This is my first post. I have found the information here really helpful. I was told 6 weeks ago my blood test showed a very low b12 level of 109 and i was likely to have Pernicious anemia. Because of neuro issues they told me injections every other day and if needed to continue until I improve then every 2 months. I had a blood test 2 weeks later for antibodies but that came back negative with the comment on the blood test form no further action required. My neurologist is concerned by my symptoms as they have been getting worse, so in 2 weeks time I have a DAT scan as he thinks there is a problem in my brain to do with dopamine and has told me my symptoms are what you may expect in parkinsons. But now I understand neuro issues are part of P.A . In the 3 years i have had symptoms I have had the following, resting tremor of left wrist with rotation and flex, occasional pill rolling tremor of thumb and index finger left hand, internal tremors, restless leg, problems with fine motor control of hands, wobbly left leg, confirmed bradykinsea of left leg with left ankle tremor, noises in head, pain in thighs, calfs and shins that are both legs at same time. Pain while resting or at night in legs, and movement of limbs that go wrong when turning in bed. The only thing I don't have is pins and needles or sore feet. I am interested if these problems I have been getting are in any way what others have had?
It was about 8 weeks ago I went to the doctor to say I was not coping very well as I had been feeling really ill and felt like I needed to be in hospital, i felt unable to work and was having waves of illness come over me. Since starting loading dose I can only feel a very small improvement but many days are spent in bed as unable to get up. Sorry for long message but thanks for reading
P.s I am 57 year old male from U.K
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Marlboro123
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We are not medically trained but there is a connection between parkinsons and B12 deficieny. All you can do is wait for the brain scan results and see what they show. Many of use on here inclueding myself have changes in the grey matter on images of the brain.
If your symptoms are due to your low B12 then your nero is correct and should be giving injections every other day. It sounds like your in good hands and being treated correctly. Sometimes B12 symptoms can get worse before better but hopefully they will improve,
It will be interesting to see what the brain scan shows and how you progress now your B12 is being treated. Try and stay positive which isn't easy when our bodies aren't reacting or functioning as we wont them to.
I hope you dont have to wait too long for your scan. I am sure other's more knowledgeable than I will respond to your post.
Many thanks for your reply, fingers crossed with being treated correctly as I have been shocked to read of the problems people can have with their treatment. Being positive like you say can be hard and at times I have had bad thoughts but since taking up painting I am coping better and it helps to produce a painting in the middle of the night when restless legs pays me a visit.
Restless legs is common if B12 deficient but it improves with treatment. Many on here now self inject me included simply due to lack of treatment and to regain some sort of life. Be patient it can be a slow recovery whilst nerves repair and often we feel worse before better.
I am much better than I were and can now manage throughout my day. Stay on the forum you can learn a lot from other suffer's on here who often guide us in the right direction which is something many of our Drs have failed to do. Always remember we are not medically trained but many have suffered similar or the same symptoms as yourself. Wrong diagnosis of B12 deficiency has often been given.
When you have finished your painting pop a pic of it on here for us all to enjoy. I am so pleased you are still able to enjoy your hobby. 🎨 🖌
welcome to the forum, just to let you know that B12 does take quite a long time to work through your system, and repair it self. Even though your neurologist might have mentioned Parkinson's, getting B12 every other day is in accordance to NICE guidelines. We are not medically trained, but each one of us have experienced many different debilitating neurological conditions.
If you are concerned (re parkinsons and B12) might be worth googling Micheal J Fox.
Please let us know how you get on, someone or another are here even if you just want to offload
Thank you for your reply. I must admit I expected to feel better straight away but I understand now it will take time. As I am self employed I find myself in the position of wanting to work but struggling to do much at all, I am thankfull that my wife is able to work longer hours to cover some of the shortfall. I will check out the Michael. J. Fox so thanks for that.
From my own experience and from reading a lot about B12 deficiency, there are many neurological symptoms that B12 deficiency can cause. I think neuro symptoms in B12 deficiency tend to be symmetrical but some forum members report asymmetric symptoms.
At one point I had tremors and told doctors I was concerned about possible Parkinsons.
I have also read that B12 deficiency can be misdiagnosed as Parkinsons.
I was told by one neurologist that he suspected my dopamine levels were low due to the unusual movements I had. At the time, I declined the offer of dopamine treatment as felt the symptoms were not serious enough. This symptom improved and after years of B12 treatment there are some permanent but very mild movements left.
I suspect that years of untreated B12 deficiency affected my dopamine levels and also suspect I have some mild brain damage.
I read that B12 is a co-factor in the synthesis of neuro transmitters, dopamine is a neuro transmitter. Search online for "b12 deficiency neuro transmitters" and "B12 deficiency dopamine".
It's possible to have both B12 deficiency from PA or other causes and Parkinsons at the same time. I have read some research that suggests some people with Parkinsons may benefit from B12 injections
There is a helpline number that PAS members can ring.
Lots of useful leaflets/articles on PAS website and a page for health professionals.
"blood test 2 weeks later for antibodies but that came back negative"
I'm guessing this was an Intrinsic Factor Antibody test (IFA or IFAb).
I suspect your doctors are unaware that a negative result in IFA test does not rule out PA. About half of people with PA get a negative result. See BSH diagnostic flowchart below.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg symptoms/causes, UK B12 documents, more B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I am most grateful for the time you have taken with all the information you have provided. I am going to spend some time going through it all and i am so relieved to find that there others who are helping people like me as I now have spent the day being more positive about how to deal with this.
neurological symptoms of B12 can mimic parkinsons.
It can take a long time to recover from neurological issues caused by B12 and it is possible for symptoms to worsen during this time.
B12 is used in the processes that reset neurotransmitters. This process will start to run more efficiently once B12 levels are good but your brain may take a while to adjust to the fact that signals are now coming through properly.
Many thanks for your reply. I do wonder why my b12 was never tested when i devolped neuro issues, i had 4 blood tests in 2019 and the only thing they found was low vit d. I can put up with the shakes but this awfull problem in the legs makes me feel if I have had my legs run over by a lorry and feeling so ill is tough but having read some of the posts here I feel more humble.
Sadly many on this forum have found to our cost that B12 deficiency is not as well understood by health professionals as it should be. They get very little in their training about nutrition and vitamins.
It's not just GPs but specialists as well. I saw several neurologists and other specialists and only one thought B12 was a possibility and as my serum (total) was normal range I did not get a diagnosis despite my neuro symptoms and other symptoms being typical.
Misconceptions (wrong ideas) about B12 deficiency
If you have time, I suggest you read the links below which discuss misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have. A good article to pass onto GP/specialist.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
One thing I'd urge you to do is to track down the local B12 deficiency guidelines for your ICB or Health Board and compare them with BSH/NICE CKS and BNF links.
CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) in July 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
If you can't find your local guidelines online or on this forum then try submitting a FOI (Freedom of Information) request to your ICB or Health Board asking for a link to or a copy of local B12 deficiency guidelines.
Symptoms Diary
Some forum members keep a daily symptoms diary which tracks changes in symptoms over time. Note when any treatment is received. A symptoms diary can be evidence of improvement or deterioration in symptoms to show doctors.
If you're like me with many symptoms, maybe just pick about 10 to track.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper started PAS (Pernicious Anaemia Society).
BNF info is out of date in above book. See BNF hydroxocobalamin link in other reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies. I think Parkinsons is mentioned in this one.
I came across a slideshow online, given by Sally Pacholok , author of book "Could it Be B12?" which discusses B12 deficiency.
Search online for "Sally Pacholok anti aging conference".
Self treatment
Many UK members on this forum cannot manage on NHS levels of treatment and as a last resort turn to treating themselves. I had to when NHS refused to treat me.
Some people take extra high dose oral B12 but others including myself report this is ineffective. Some go to private GPs for additional jabs and some get injectable B12 from European pharmacies. It's possible to get B12 injections from some beauty salons in UK.
There is an online petition to get injectable B12 available over the counter in UK.
At least your doctors have said injections every other day for the moment and after loading injections finish then injections every 2 months. This is the pattern recommended in BNF for those with "neurological impairment".
There is no set time limit as to how long the every other day injections can continue for, could be week or even months of them. BSH document suggests a possible review after 3 weeks of every other day injections.
If your symptoms are improving then I suggest challenging them if they want to stop the every other day injections. BNF suggests that as long as symptoms continue to improve so should the every other day injections. A symptoms diary might be useful here.
See BNF hydroxocobalamin link.
I think many UK forum members struggle to get recommended pattern of treatment if neuro symptoms are present. Most get the pattern for those without neuro symptoms which is 6 loading injections over two weeks then injections every 2 - 3 months.
Your GP can find this info in online BNF or in BNF book Chapter 9 Section 1.2
They'll have a BNF book on their desk or bookshelf.
I just saw this article about B12 research and Parkinson's Disease the Michael J. Fox Organization is funding. Here is a link michaeljfox.org/grant/relat...
Many thanks for your reply. I found the information very informative and together with all the others who have posted I feel I have come to the right place, as you can feel very alone when you think it is just you.
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