i’m a 43-year-old guy who’s been diagnosed with Parkinson’s for five years. The meds for Parkinson sort of help. I’ve tried lots and lots of things, but the thing that made me feel the very best was B12. I think I have pernicious, anemia and Parkinson’s. I also have a very low B2 levels. If I don’t supplement . about three years ago, I was taking a supplement that had riboflavin I tried some B12 shots. I felt amazing, but I was also doing something else that hurt my kidneys. I thought it was the B12, so I stopped about a year after I started taking B12 again, but this time I took a bunch of folate. Way too much folate I felt good for a little while, then my walk became terrible. So I stopped the B12 again.
recently, I started to supplement riboflavin again. I’ve taken intermittently, B12 shots nothing consistent without folate.
After supplementing, B2, with not much b12, and no folate, my folate levels were off the charts. My homocystine was slightly elevated at the top of the range. My MMA was in the middle of the range. My intrinsic abs test was 1.1 with a range of 0-1.0? I don’t know what that means
The last week I’ve taken B12 shots every third day. I feel really good what’s wrong with me?
my neurologist, says my walk is not Parkinsonian, I wonder if it has to do with the B12? Could I still have PA. I seem to be feeling better taking B12 shots with no folate. I know there’s no harm in taking B12 shots so I’m gonna continue on.?
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38yroldmale
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It's a careful balance of vitamins such as folate, B12, iron, vit c, others on here with better knowledge than I will advise. I have a neighbour with suposed MS who was in a wheelchair who can now walk after having regular B12 injections ! No not a miracle just a wrong diagnosis.
B12 is not toxic and water soluble and what the body does not use is flushed out in the urine. I wondered if I had parkinsons which can run alongside one of my other conditions albeit I didn't suffer with the tremor's or shakes.
I have improved with daily injections which are self administered to the point I can now function but i'm still unsteady on my feet.
If PA damage has occured and nerves have been damaged they will take time to repair. You have every right to question your diagnosis and interesting to hear your neurologist disagree's with parkinsons. There was a break through with regard parkinsons via hand movements. Infact I looked then up on Utube and carried them out myself just to prove I didn't have it.
Insist on a trial of B12injection's, if agreed you will get a loading dose then 3 monthly injections. Because I were still having symptoms I requested 2 monthly shots which to my surprise my Dr prescribed ! I still wasn't symptom free so took it into my own hands to self inject. It would be interesting if you were to list your symptoms. If you have a diagnosis of PA you should be on injections for life which is stated in the nice guidelines.
We are not medically trained on here just fellow suffer's who like yourself questioned and wondered why we were suffering such life changing symptoms. Your such a young man it would be wonderful if you could regain a bit of the old stamina back.
Welcome here. Thank you for filling in your biography, it does make life a lot easier.
I am Medically trained. I am a Midwife (you may not have them in the States) who was not taught about Pernicious Anaemia. A midwife is an Autonomous Practitioner who specialises in pregnancy, birth and the postnatal period. We then choose further areas to specialise in. Please note that Haemorrhages are common in Obstetrics, so we work closely with Haematologists.
I now know about Pernicious Anaemia. I have gained further qualifications in this area. I also attend lectures in person or through Zoom and network with researchers and neuroscientists.
Now History Taking is important and so is Examination.
You have a Family History of Autoimmune Diseases. Your neurological symptoms are visible. You only mention your walk or gait.
A person with Parkinson’s Disease has a distinct walk. A person with Pernicious Anaemia has a different walk. I know the difference. If you have Pernicious Anaemia, your walk is called Ataxia.
The back of the brain is responsible for movement and coordination and is called the Cerebellum. Please Google. If you understand a tiny bit of anatomy, you may be able to understand your own unique symptoms. Signs and symptoms are more important than blood results. These are arbitrary figures on a screen.
So, keep a symptoms diary. Please video yourself because you may notice over 2 weeks some improvement. I know you are in the States but here is a link to Ataxia U.K.
It is worth having an appointment with a Dietician for individual care and treatment. They can tailor individual doses, interactions and bioavailability to you, 38yroldmale. Bioavailability means how easy it is to extract the chemical into your body.
B12 deficiency can cause damage to the myelin layer around nerves which then leads to a variety of neurological symptoms.
B12 is a co-factor in the production of neuro transmitters in the brain such as dopamine and seretonin.
I'm not medically trained just someone who struggled with unrecognised and untreated B12 deficiency for many years.
"my neurologist, says my walk is not Parkinsonian"
In severe cases of B12 deficiency, the spinal cord may be affected. This is called sub acute combined degeneration of the spinal cord (SACD). One of the symptoms that can be associated with SACD is an unusual gait (way of walking).
I wondered if your neurologist had assessed you for SACD if your walking is affected.
I've read articles online that suggest SACD can be treated successfully in some cases if found early enough and if patient gets enough B12. Severe folate deficiency can also lead to SACD but I think this is rarer.
Misdiagnosis of B12 deficiency as other health conditions
It is 2 am here, so I will try hard to remember to return with more.
Kidneys - I have one kidney, so I keep a close eye on things. I was worried that my b12 shots, especially since I take cyanocobalamin, were impacting my eGFR. I now believe it was my thyroid, issues found after the b12 deficiency. I am not 💯 but leaning more that way.
I also have gait/walking issues that are an unknown still at this point, four years after b12 deficiency found & treated. And a year and a half after my thyroidectomy. I am determined to unlock the code. I used to walk everywhere and bounce up and down subway steps.
I am so sorry you are going through so much. Will return.
Hi, Good Morning, A positive response, in terms of reduced symptoms, to Parkinson's meds is a diagnostic for Parkinson's. If you had no response then is unlikely you have PD and vice a versa.
A Parkinson's gait is quite distinct and if someone who is familiar with it says your walking is not then I would certainly investigate your diagnosis further.
B12 tends to be low in people with PD and it is recommended the levels should be kept high as low b12 levels exacerbate symptoms.
In addition there are treatment protocols with thiamine which are described by Antonio Constantini et al in peer reviewed scientific papers. His work has been summarised in a work by Daphne Bryan
It is thought that over 3000 have significantly reduced their symptoms and appear to have halted the progression of PD using the protocol. It remains unclear / tragic why the protocol is ignored by consultants and researchers.
A friend who has essential tremor has almost completely stopped their condition with high doses of b12 and thiamine.
I hope you are able to clarify your diagnosis and find effective treatment.
There was a small study where some with Parkinson's Disease responded to thiamine (Vitamin B1). Wernicke’s Encephalopathy (severe Vitamin B1 deficiency) has a triad of symptoms - ataxia (the walk) nystagmus (eye tremors) and confusion.
Great news about your friend. I also had ataxia from vitamin E deficiency. Please note that this is fat soluble so builds up in the body.
Cornwaller , Narwhal10 & anyone else if you could share gait/walking descriptions any further so I could get a picture of it, and remedies I would be extremely grateful. I do not feel there is a need nor would it be productive to start a new thread. Why? 38yroldmale is unsure about his diagnosis and the specific reason for his gait issues as well
I describe mine as a very unfamiliar gait, saying right/left iny head at times just to move (which drains energy too), lack of strength but NOT ???? 🤔
Meaning can't stand or walk more than ten steps. A shower (with time needed) is a feat. BUT I have no atrophy, in fact I believe I have gained muscle growth. It is either neurological or quality muscle remnant of sepsis (unfortunately I had it twice, relearned walking the first time but the second time was very different or b12 deficiency impacted recovery)
I had foot drop regularly, balance issues and falls. But most of that disappeared four years ago with b12 deficiency found & shots.
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38yroldmale Adding from the other night. My mother was given Parkinson's drugs yet she never had nor was ever diagnosed with Parkinson's. And I found that out when I started to care for her on a FT basis (dementia).
When questioned about it I realized her doctor was probably throwing things at what he did not understand. He had and has the worst and rather alarming reviews And as cornwaller noted these drugs have to make some difference to denote Parkinson's. That is what I was going to write the other night. They made no difference for my mother and my parents were of the generation of whatever the doctor decides is the best.
I won't go into this at too much length - and it is way too emotional for me - because it is your thread but everyone please get your b12 supplementation in order. I do not believe my mother passed away of complications of Alzheimer's/dementia. I believe like me she had pernicious anemia/b12 deficiency. My issues were not found until the year after her death. I knew nothing about b12 deficiency. But mine started while still caring for my mom. It breaks my heart - and makes me feel ill - to know my mother *might have* been saved from such suffering from a mere b12 shot.
I am so very sorry to read about your mother and yourself. Caring for someone is very hard. I totally understand and yes, it makes me very sad to learn of your mum.
Bless you, yes, the internal dialogue is very common for people with internal, external tremors and mobility problems. Please note, I do not know everything. Chiropractors and physiotherapists do great gait analysis. You might consider a trip to one.
Whilst studying Diseases and Disorders of the Brain, a gentleman had a stent fitted into his brain to control his tremors. He told the interviewer within 45 seconds off switching the stent off, Now I cannot concentrate to hold a conversation as I am too busy trying to control my tremors.
There is a videos on YouTube, if you type in Ataxic Gait. Sorry the link does not work.
Nobody’s gait is the same. Although, a description can include :-
1) May have difficulty initiating a step as struggles to change the centre of gravity to only having one foot on the floor.
2) Tremors may be seen or just felt, they would be high frequency.
3) A wide base, feet may be up to half a metre apart.
4) Arms may be held up, not hanging at the side because person is trying to maintain their balance and the arms can be swaying.
5) Feet may be slapped on floor due to numbness in feet, legs. This creates vibrations in the trunk, so the brain has an estimate of where they are.
6) Feet may be slightly turned out also trying to maintain balance.
7) From the video, you see the doctor looking at the floor, this is usually about 3 steps ahead. Visual clues are from the floor.
8) It is clumsy and non-rhythmic and people are often mistaken as being drunk or have taken street drugs by the general public.
It is a lot for a person which can involve co-ordination, balance, pain, numbness and muscle weakness. So, yes you are doing marvellously well showering and walking 10 steps. Thank goodness no more falls.
Thank you so much! It’s amazing how kind people can be without even knowing someone. I am going to continue to supplement b12. No more folate. I also have MTHFR 677t which makes my folate processing terrible. B2 has almost completely cured me of that. Have you looked into that. It cause gait issues as well!
Okay so, it is my understanding that with MTHFR gene you will struggle with Folate or vitamin B9 causing under-methylation or over-methylation.
Now, I put this post up. Do not get hung up on the ‘science’ use a child’s mind and count all Green, all orange, all pink. They correlate to number times B1 or B2 is needed in a cell.
B2 deficiency needs to be treated before or in-conjunction with B12.
You will see there’s no folate or B9 in the picture because it’s in a different cycle. I use cooking as examples. Making a cheesecake, you make the base and cheesy bit separately then when both complete construct together. So B9 is made separately but all other Bs are together.
Hope that makes sense.
So, read around Folinic acid for yourself. I only know basics sorry. Technoid May much more on biochemistry and FlipperTD.
Thanks so much Narwhal for everything. Lots to go through. It has been almost seven years now & I am not at the place of acceptance. I have just started to use a cane, which was hard to drop my ego about - but happy that I have. I am determined to unlock the code. I have not put a ton on doctors, as there has been so much else going on but regardless they have been absolutely useless (besides my gynaecologist, who allows me to bounce things off of him - wonderful doctor & even better - wonderful man).
My endocrinologist, who I have seen maybe five times in my life, and only recently & have hardly brought up my legs decided to share this week that he felt my legs were a 'mental health issue'- I was livid. Told him I found it offensive to label something physical a mental health issue especially without any background ever given & especially since there has been zero question asking by him in this area or testing on his watch. Asked him to immediately clarify his point a la where is this coming from?, he refused. I understand mental health challenges can bring physical manifestations, that are real. I have also been open that this could be a neurological issue. But neurological is not the same as 'mental health issue'.
His giving his opinion, with nothing to base it on, might just fall under his mental health issue. Laughing.
Laughing now but can not say that it did not affect me. I was already exhausted coming out of a procedure and getting prepped for a family Christmas party.
So much wasted money on our systems dealing with their nonsense, makes me livid all around.
Now Fred Astaire used a cane and oh whoops my coordination is so bad that I accidentally on purpose thwacked your endocrinologist. What area of his body, I cannot say but tears to his eyes were brought.
So doctor would you say the pain was stabbing and 10 out of 10 ? I will give you a couple of minutes to get up from being curled up on the floor. Now, try that for 10 hours and you may have some understanding of childbirth. You appear to have forgotten you were born.
Good luck with everything, it is a journey of learning with acceptance, grieving and seeking support from those who understand.
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