Hi all am a 55y old female live in Scotland and was a staff nurse for years, had to take early retirement due to a diagnosis of MS in November 2014. I have a younger sister who had been diagnosed with MS 30 years ago, so knew the signs and symptoms. I have a 33y old daughter who has 3 young children, and she has stared to have symptoms that I now recognise from my early years. I had minor symptoms for years and made all sorts of excuses regarding causes. Until the minor symptoms became major ones. Eventually ended up numb from the my feet to my bust, had problems seeing, walking, eating, drinking, bowel, bladder problems ect ect ect. I have read and tried all sorts from MS medications, diets, nutrition, excersises the past 3-4 years. In fact sick of researching but can’t do much else as limited with every day life. I got fatter and more debilitated, look older than my years and feel about 104. That’s my life in a nut shell. Now for the real miracle, Although I knew about B12 and PA, and most of the problems associated with lack of vit B. I have recently discovered the true meaning of B12 deficiency, with research and investigation, and ignoring my Dr I have commenced on a mission to take control of my own health and well-being. No more toxic MS drugs, start healthy eating, stop smoking, take regular exercise, commence B12 injections, folic acid, potassium, iron.
Now Iv had every symptom, pain, numbness, brain fog, anxiety ect ect you can image, and when you start taking B12, which you must flood your body with as it has been depleted of B12 for probably years. Your nervous system has either shut down, or certain areas became inflamed. You begin to get all the symptoms that you forgot about as the nerves that can be saved, or reversed start to flare up and become alive again. I have just started B12 injections, folic acid, iron and potassium 5 weeks ago. I commenced 1mg/1mL of B12 hydroxocobalamin injection every 48hours for 2 weeks, then one injection weekly iron, potassium, folic acid daily. I have to continue the B12 regime until symptoms disappear. Then monlthy injection. The longer the symptoms the longer the recovery. I have not had bloods checked by My GP for over a year, in fact since I completed a course of cobalamin tablets for low levels. Am a natural red head, have very pale skin, bruise easy, iron levels have always been on the lower side most of my life. Oh how blind was I..... you trust your Dr when he gives you Meds hoping they will make you better. It’s not really their fault, they have protocols and guidelines to follow and they do this to the letter usually.
Since starting this regime I can now get out of bed, can see property, brain fog gone, can think more clearer, have more energy, although it is early days for me and I will continue on this pathway until my health improves hopefully 100%. My made daughter go see her GP, bloods showed low levels of B12 folate and iron, they gave her folic acid tabs and iron tabs and sent her on her way. I have now just recently started her on my supply of B12 injections and within 2 jabs she has started to notice her symptoms deplete and her health improve.
While Researching B12 insufficiency i came across an American Nurse called Sally Pacholok she is an Er nurse who takes on the establishment and uncovers an epidemic of misdiagnosed B12 patients. Not just pins and needs and numbness, but MS, Parkinson’s and a whole host of central nervous system disease. Check her out on you tube for more information, this will give you an insight into how B12 diffidence can take over your like.
There is also a B12 Diffiency charity support group on B12 org, they have a very informative fact sheet to follow with your symptoms.
Most Gp will not prescribe B12 unless you have PA, and if so they only prescribe monthly or 3 monthly injections. For those of you outside GB your medical insurance may not cover B12 injections at the above rate. Hydroxocobalamin 1mg/1mL is less than a £ to buy. I source my B12 injections from a company in Germany they deliver world wide. I ordered 40 injections at a cost of £41.20 tax and delivery included. Www. VersandApo.de is the link for B12 ampoules, get your needles and syringes from EBay.
Remember everyone you can not overdose on B12, your body will let you know when you have the required amount to function normally. Hope this information will help anyone who is interested in my story, good luck to you all and happy health with B12.
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Margomck32
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Thank you for sharing your story - it truly is a scandal. I too have suffered due to the ignorance of doctors .... as have so many on this Forum. I also dip into the Ataxia Forum from time to time - where again members are sometimes diagnosed with MS.
I would also suggest the correct thyroid testing - as LOW thyroid and LOW B12 can be very similar ....
I live in Crete - have Hashimotos - Crohns and B12 Deficiency due to surgery I believe
Hi Marz just shocking, am beginning to come to life after years of debilitating symptoms, sally B12 is the nurse in America, she wrote a book about B12, she states that anyone who has had an anaesthetic in the past, or anyone on proton pump inhibitors ie lanzaprazole, omeprazole, for heart burn, stomach acid reflux, they all have an inability to make B12 in the gut.
Get yourself some B12 ampoules and inject yourself, flood your system until you see improvement.
I can buy B12 OTC here so self-inject weekly and would never take a PPI. I only take my thyroid meds and loads of supplements. My B12D is due to not having a Terminal Ileum where B12 is metabolised ..
There was a post on the New Beginnings b12 Facebook page this week from a woman who had had her ileum removed and initially prescribed b12 injections. But once her levels had reached a certain point, her GP, supported by the consultant, stopped her injections. Why do we seem to know more about physiology than doctors do?!
Could you point out the Guidelines - BSH Cobalamin and Folate Diagnosis & Treatment - to the person concerned on FB. Link is in sleepbunny's reply below These Guidelines should be read by her GP. Maybe the person can download them and highlight relevant bits for GP. First - treatment should be based on clinical signs and testing whilst being treated is of little value ...
Thanks März, this example of negligence really shocked me. Fortunately the group is a "spin off" to the b12d charity which Dr Joe Chandy set up so they have the guidelines to hand. Ironically so do the GPs have the BNF 9.1.2 guidelines to hand but seem to conveniently forget them along with their training of basic anatomy.
As they do with so many chronic conditions that do not need money spinning BIG Pharma drugs 😊 I had my Terminal Ileum removed with Gut TB and in spite of six monthly Gastro appointments over 30 plus years for Crohns - my B12 was not mentioned or checked !
Good God Marz, it all beggars belief. Such a long time to not feel well and the medical profession to be oblivious to the cause.
So scary that every day, patients are being pushed to accept depression and anxiety medication, rather than investigating the root cause. When I had a chronic cough, the first GP's reaction was to prescribe PPIs (no surprise there) before eventually being referred for all the usual checks. (She didn't refer me). I thought the GP that finally prescribed amitriptyline on my request was wonderful as I thought she'd dismiss my research but now I wonder that because this treats depression, that explains why she didn't put up a fight.
As my husband said earlier, the Big Pharma use their profits for research but it still must be so open to abuse.
The amitriptyline sorted out my cough in a matter of days but the months of ill health resulted in me receiving a written warning about my sick record. That's the civil service for you! (Amitriptyline helps calm the vagal nerve).
I have never had a Anti-depressant in my life ! - even when I was in hospital for 22 weeks - 5 operations - TB treatment - away from my young children - just had days when I felt blue.
Research funded by Big Pharma is also peer reviewed by .... Big Pharma !
I once found a piece of research about B12 relieving a persistent cough !
There was a very interesting lecture in Brussels last month "Killing for Profit" about patients being prescribed unnecessary medication, particularly statins. Dr Aseem Malhotra also mentioned the biased funding of research. Lots of mention of Big Pharma! Perhaps things will gradually change in the patient's favour but probably more to bail out the NHS if something is found to save money.
About the use of anti depressants, it was suggested that my feeling of suffocation was caused by anxiety, if only it was that easy to fix. I so resented being asked if it was anxiety by one of the GPs when they only had to check my history and see that this is not something I've ever visited them about. Fortunately, the next GP I saw queried the previous one's thinking. Like anything, in the right situation it can be a life saver but as I was reading about statins, the drug is only effective in less than 1% of patients.
As b12 can help depression, yet another reason to prescribe and symptom it can help.
Thank you so much for sharing your experience Highland49. I had the exact same experience. I had a chronic cough, went to the doctor, she looked at my throat, and there was nothing obvious. She told me that I had acid reflux (GERD) and wrote a prescription for Omeprazole. I did not take the Omeprazole since I have vitamin deficiency from intestinal problems. I have now been on supplements and injections for nerve neuropathy and my cough has improved. While I will accept that GERD might contribute, nerve damage is the big factor I suspected. Yet I had never seen anyone else with this experience other than yourself Highland49. I think you helped me confirm this.
You were very fortunate that you realised the link with PPIs and their affect on absorption. At the time, I knew so little about nutrition and deficiencies. I just blindly accepted what my doctor told me but I now know that this medication was a factor in causing and/or worsening my b12 deficiency. I believe that my health problems started when I had the mirena coil fitted, it was definitely downhill from then on. But I now look back and know that I had symptoms of hypothyroidism from way back. A change in hormones put everything out of kilter.
Whenever I see someone mention a chronic cough, I always like to reply with my experience of it but you're the only fellow sufferer on here that I've come across! I think that vagal nerve inflammation and nerve damage is vastly overlooked by the medical profession. It's just from trial and error and research that we find out our own answers. These sites and forums so help.
Hi buster Iv just read your story on your post... shocking.. but your doing the right thing.. prove they DRs wrong .... if you need any help pm me on messenger, it’s margo Mckay ...I will help you as much as I can
I read about amitriptyline calming the vagus nerve and my GP was happy to prescribe as we know they're very keen on their antidepressants. After 10 days on a low dose, the chronic cough was so much better. I continued to take for 3 months, then gradually reduced the frequency. Hopefully this would help you.
Hi Margomck32 your daughter's doctor even mistreated her "low levels of B12 folate and iron, they gave her folic acid tabs and iron tabs and sent her on her way".
Treatment for the low B12 should have commenced before the Folate supplementation.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Hi clivealive I know, they said her B12 levels where on the low side after she asked, but not to worry. Lol aye ok DR stick your vit B12 where the sun don’t shine.
It’s about one of the cheapest drugs on the market and would save the NHS and private insurance companies millions if they got people’s levels up to the higher ranges on there scale.
As you live in Scotland you may well suffer with LOW VitD - do you know your levels ? so many people with MS have Low VitD as do B12D and thyroid sufferers - and of course many other conditions. You need a level of at least 100 to prevent a host of diseases. There is a chart in the link below to indicate levels needed to prevent many conditions including cancer.
In the above link you can click onto Health Conditions and ....
VitD is a steroidal pro-hormone and is anti-inflammatory - so more than a vitamin. With 12 million people in the UK on Statins blocking cholesterol - will prevent the sun working with the cholesterol to make VitD - hence the deficiencies - another scandal ! Also being in Scotland you are further away from the equator than me
Thank you for sharing your story. I was driven to self treat with B12 after exhausting all possibilities of NHS B12 treatment. I could not face continued deterioration and feared SACD and dementia.
I would add a word of caution about taking potassium supplements. I have read it can be harmful to take too much.
In UK, NICE guidelines recommend that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Most useful piece of advice I got, was being told to always get copies of all my blood test results. I found abnormal and borderline results on copies after I had been told everything was okay. Some people on forum get a complete set of medical records.
Hi sleepy bunny you’ve been a busy bee, thanks sooooo much for all your links there amazing. I know about the potassium levels so only take bananas regularly. I try to avoid meds as much as possible, if I can get the source via nutrition then that’s the safer route. Didn’t know about B12 petition before parliament, just going to have a look now. Thanks again, wish you health wealth and happiness.
I suppose you know that Scotland has (allegedly) the highest rate of MS in the world. It makes you wonder how many of those really have a B12 deficiency - you should get out there and tell your story and well done to you for taking your health into your own hands. Its a sad indictment on, not only our health system, but health systems throughout the world that they fail to recognise the difference - or do they. There is certainly more money to be made by Big Pharma in treating MS rather than a £1 a pop injection.
Hi Cassie yes I do know MS is everyones relative in Scotland, or as you said, is it MS or B12 deficiency neglected far too long. It’s shocking what big pharma gets away with, but they have people on every board in every university in Briain, so they call the shots of what to teach.
I was afraid that might be the case here, it is certainly true of the US. Governments are very protective of big business, especially those who provide funding for education, so I don't think things are going to change any time soon.
Thank you so much for sharing your story Margomck. I need some more time to take all of this in because of this awful brain fog right now. I can’t concentrate however interesting anything is but what an eye opener so far with what I’ve read!
I’ve been feeling unwell on and off for a long time.i found out my My vitamin b12 is low on Tuesday after being seen as an emergency with so many neurological symptoms. I started injections today Thursday..I have so many strange symptoms. I am still unsure if my treatment will work I never take anything for granted. I know my symptoms could be many things. ..but they do all add up to being vitamin b12 deficient.
I will read more of your story 🙂. I just can’t concentrate well at the moment and it makes it so hard to retain what I’m trying to read!
Thanks winterlight I feel your pain, I was in the same predicament, never lose hope, you will improve, just flood your system with B12,, get folic acid and iron levels checked. Hopefully youll start to notice slight changes soon. God bless and kill that brain fog. Vit B12 rules.
Hi Katherine still early doors for me, only slight improvement, some days one step forward and 2 back, the longer you have the neurological symptoms the longer it can take to reverse, some might never reverse. However am a positive stubborn person and never give up, (probably the reason I had symptoms for years be4 I finally did something about it) so hopeing for a complete cure some day soon lol I can only dream. Make sure the start you on them 7 injections over 2 weeks, most GPS don’t know the protocols to commence, and the guidelines for levels are badly nearing reviewed. Keep healthy and happy Vit B12 rules.
I am having to self inject (not started yet)....been treating myself with Jarrows B12's 15,000mcg a day, bloods to high! even though I have enlarged red blood cells and all the other blood changes that go with a B12 definincy. They are at least going to test me for Celiac as my IgA's are very high. Early doors for me Margo the knowledgable B12 doctor said I would have been in a wheel chair this time next year with a diagnosis of MS.
I too initially thought I had MS. Had a brain MRI that showed some very small spots but my neuro dr didn't think it looked like MS. So he did a lumbar puncture to confirm and that came back negative. It was then after all MY research and not my doctor's that I found out that it was B12 deficiency!! My neuro doctor even was shocked that it was B12 def. He applauded ME on finding that answer, when in fact it should have been HIM that knew of the mimicking that B12 symptoms have compared to MS. Unreal!!
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