I'm just wondering what people were initially misdiagnosed with? When I was at my most unwell my GP at the time wanted to diagnose me with Fibromyalgia. I was adamant it wasn't that, and would not accept that diagnosis. Another GP at the surgery was talking about going down the MS route. That was until I fought for a trial of B12 injections......and improved. I personally know of a couple of others who were misdiagnosed with Fibromyalgia, but then improved with injections. So I'm just curious to know what people are routinely being misdiagnosed with.Thank you x
Out of interest......what were you in... - Pernicious Anaemi...
Out of interest......what were you initially (mis)diagnosed with?
Written by
BeachArt
To view profiles and participate in discussions please or .
Read more about...
52 Replies
•
My daughter, fibromyalgia ,after lupus rules out + arthritis and cauda equine Myself vertigo and anxiety and depression!
Menopause sympotoms !!
Also migraines and chronic fatigue.
Most of which were symptoms.
A brain MRI ruled out othef things bit showed T2 flares and white lesions and some myenation on one scan disputed on another ....
Now where do I start. 🤔
M.E Chronic Fatigue Syndrome Functional Neurological Disorder Depression
I were also screened for MS which is a common one to be confused with a B12 deficiency. I at one time told it was just my age by a Dr !
I have a diagnosis of Fibro Myalgia yet there is no firm test for the condition, nor is there for any of the above conditions other than MS. I put the other conditions down to we havn't got a clue labeling.
My macrolytic anemia was diagnosed as me being a silly girl for not eating properly 😞
Took them another ten years to diagnose P.A. after I refused to leave the Drs office one day until they ordered the tests.
topazrat, so sorry to know.
I had something similar re: not eating properly. The Poor Little Munchkin was totally unaware that the last person who annoyed me got buried under a house. I kept the Ruby Shoes too. ✨
Lol I'd keep the shoes too. 😂
The witless wonder also said that I was 'too young for the other thing!' If I'd know back then what the other thing was, life would be so much different now 🤬
I am so sorry topazrat. Many of us would have had very different lives and think we might have a couple of books on the ridiculous things we have had said to us.
Often whilst engaging with ‘people’, I think, Wow, shall I ask them do they know how to tie their own shoe laces ? Father would often come home from work and say, Yep, I deal with a bunch of thickos. We would laugh at the sheeple.
Fibromyalgia, tired all the time, IBS, anxiety states, chronic low back pain, various muscular conditions, eye problems, osteoporosis, iron anaemia, asthmatic problems, the list goes on!
Of course I do have most of these conditions but most would have at the very least been made worse because of my b12 deficiency.
Eventually my b12 was tested for the first time and was only 58! I hope that when the new guidelines are published that testing becomes routine as part of the full blood testing.
I had been symptomatic for PA many, many years ago but had never even heard of it before my diagnosis.
BeachArt sorry Narwhal10 I replied to the wrong person 🤔
Easily done Showgem. I forgot my uncle’s name when introducing him to a sibling. Just was honest and said that my mind had gone blank.
I am really sorry to read that you too had all these diagnoses and have been symptomatic for decades. Having a B12 of 58 mg/L is low.
It is wonderful that BeachArt asked this question. Thank you.
Can this post be pinned Gambit62 or is there one or several already relating to Misdiagnoses and Delays in Diagnoses ?
Best wishes
Probably a time-wasting hypochondriac. Until a GP did the B12 test I was annoyingly sub-clinical. And that was the problem over several years.
Hopefully the new Nice Guidelines will help to stop this sort of thing taking place in the future. 🤞
what are the new nice guidelines?
Oh BeachArt,
Great question, a long list from depression, fibromyalgia, functional neurological disorder.
You writing your letters is a perfect way in letting them know what the misdiagnoses can include. I know the PA Society has links with the B12 Society, Scotland.
theb12society.com/b12-commu...
They had/have a wonderful poster with 30 probable misdiagnoses which include Alzheimer’s disease, Dementia, Parkinson’s disease, Ataxia, Multiple Sclerosis, Vertigo. I cannot find the poster presently.
I do hope you and others have the misdiagnoses removed from your Medical Records. Plus, any wrongly prescribed medication such as antidepressants needs to be reported too. In the U.K., to the :-
Best wishes.
Hi,
Vertigo of which I am suffering from at present can be caused by a B12 deficiency !
Vitamin B12 Deficiency: A simple vitamin deficiency can also cause vertigo and dizziness. Vitamin B12 helps prevent anaemia and keeps nerves and blood cells healthy. Low levels of this vitamin can cause neurological problems that in turn cause vertigo. This is because vitamin deficiencies reduce blood pressure and blood flow to the brain.
Ataxia can also be caused by both a Vit E and B12 deficiency.
Ataxia cerebellar dementia and leukoencephalopathy can result from vitamin B12 deficiency. To limit the risks of sequelae, vitamin B12 supplementation should be started at an early stage.
At least the above proves i'm not drunk after all. 🥂
Fibromyalgia. . . . .. It was about the only thing they could think of I think but I immediately replied. . .NO. . . . . My symptoms are nothing like those listed for fibromyalgia and ye havnt even examined me for fibromyalgia. . . . Do not write that down. . . . . . That was in 2002 I think. . . . . . . Fibromyalgia to me is one of those things that when they are beat for an answer they use. . . . . I am not saying it doesnt exist, it may do nor am saying anyone suffering from it doesnt have a problem. . . . . . . I didnt have it and has been proved since by a B12 diagnosis. . . . . A diagnosis that could have made in NHS land where I was living at the time but not a mention of a B12 deficiency test. . . . . . Then around 2011 I was diagnosed with a major depressive disorder and anxiety. . . . . . . By a GP mind. . . . . . Since I got settled on my B12 and even during the loading injections those symptoms which were not depression but exhaustion got sorted. . . . . . . . And it was no false cure. . . . . That was 3 or 4 years now. . .must look it up and I dont thnk I have had an anxiety attack since . . . . . Not one . . . . . Not one mirtazapine. . . . . .
Chronic inflammatory demyelinating polyneuropathy
ME/CFS
Stress and depression 🙄
Bronchitis. I had developed a chronic dry cough. Turns out it was sensory neuropathy due to extreme B12d/PA.
B12 deficient and folate! Not absorbing my B complex at all ! After taking for over a year! Maybe you have Chronic fatigue syndrome 🙈
At first I got the correct diagnosis , one of the very very lucky ones , od PA because I had a positive IF test. Then when the injections were spaced out and the symptoms got worse again I was told it was Chronic Fatigue Syndrome, then Functional neurological disorder ! Changed surgery, now waiting for a spinal MRI now later in the month. I felt no vibration in my hip 7 months ago which they ignored, caused me problems !!Now I have vibration back and also movement thanks to daily B12 injections done myself. Thanks to the PA society I knew I had to DIY
Never been misdiagnosed! Tested and looked over for so many diseases, that I can't fully remember. I even passed the PA test. One GP wanted me to see a trick cyclist! It was only when I had a B12 serum test after I had been taking sublingual b12 for a couple of months that I realised I had PA my result was 178, 3 points above their minimum. My grandmother and mother and father were all diagnosed with PA. I'm not, but I do have to fund my own treatment. GPs have decided I'm not worth talking to. Since last autumn I've refused a pacemaker, and two new knees, I've been self injecting B12 for nearly six years now, and feel better than I ever did in the past 40 years.
Years ago CFS. When it got worse FND. I refused all diagnoses and treated myself. 😁.
"mild" B12 deficiency. They only tested B12 because I realized the problem. Based on my time of neurological symptom onset and severity and the damage done by following their advice to undersupplement I knew the situation was more serious than that and referred myself to specialist care which my GP agreed to only begrudgingly. The specialist diagnosed me correctly then but primary care never agreed that I had any serious issue as my MMA was not raised and an MRI 2 months into treatment came up clear. At some point primary care concluded it was "Somatic Symptom Disorder". But at this point I had also stopped caring what they thought or what their advice was anymore. They were worse than useless - their advice caused a severe deficiency and then they couldn't accept what had happened from their advice. I never got an apology or any other admission of fault. It totally changed my attitude to doctors/healthcare (and nutrition, which I now study).
Technoid,
At some point primary care concluded it was "Somatic Symptom Disorder". I would love to know HOW they came to the conclusion. So, explanations, rationales, lines of thinking, exclusions, inclusions. It would be a really long drawn out conversation over a good few hours.
Really pleased that you stopped caring what they thought or what their advice was anymore. Yes, Chocolate Teapot Syndrome is prevalent and has a high incidence. Patients know their body better and generally, have far superior knowledge on their own diseases, illnesses and conditions than the medics. Utilising Specialist Organisations, dedicated charities, reading books, undertaking research, discussing with others who have the disease.
Recently, talking to an acquaintance, they mentioned a rare genetic disease and the Professor they were under. Prof was furious, apologised to my acquaintance and told many Health Professionals off. I had not heard of the disease but knew both the Prof and the dire consequences of the disease.
If a Medic, Health Professional cannot say the words, Sorry, I have made a mistake. Or apologise on behalf of their colleagues, then they need to leave the profession. It is called Humility found in Medical Ethics.
Yes, fibromyalgia, then depression... then the menopause.
Which all cleared up after taking matters into my own hands and self treating with B12, Vit D, a decent A-Z multivit and Iron. Funny that... 🤔
Initially treated by GP with Thyroxine, still not well. Consultant GP did Blood Test which showed atypical Epstein Barr infection. diagnosis CFS. More than ten years before diagnosis of Pernicious anaemia
Wow great question. I was misdiagnosed with so many things in which the symptoms of those improved with b12. Most are catch all diagnosis or names of symptoms. Lupus, ibs, depression, anxiety, OCD, melasma, rosacea, neuropathy, tendinitis, sciatica, and more. Last year fibromyalgia was suggested. None of this ever felt right and I didn't accept. For example, I used to tell my doc my anxiety felt physical, not mental. Felt like the nerves in my body were shaking and on fire.
Yes my anxiety was all the physical outpours of such with no mental symptoms . . . . . It was like fight or flight without the fear?????
Yes exactly. Like I was internally shaking all the time.
I too had the physical symptoms of anxiety, like I was stuck in fight or flight. I felt jittery all the time, like I had too much coffee to drink, even though I don’t drink coffee and stay away from anything caffeinated. I’m a lot better since injections, but still don’t feel like I’m in Rest and Digest yet. I’m currently seeing a naturopath who is wonderful and I’m seeing the most progress since starting treatment with her a couple of months ago. I would say that I was misdiagnosed as having anxiety and also Long COVID (which people really need to be aware that long COVID symptoms are identical to b12 deficiency).
I swear just in the past few months my muscles relaxed for the first time in my life. I had no idea I was constantly clenching every muscle in my body which seemed to be due to constantly feeling like I'm in fight or flight 247. Life is so different for me now and I'm so thankful.
That’s so encouraging! You are the only other person that has had this symptom that I know of. That is exactly how I feel. Especially my legs. My muscles are constantly tensed up and I can’t relax them?? They only feel better when I have more regular injections, which is a constant fight to get. It should not be this hard.
CFS and mild cognative impairment.
Great question, seems to be a real theme to our misdiagnoses. Firstly told it was menopause, HRT had little effect, then told it was my pre existing psoriasis and psoriatic arthritis, despite being on treatment, then told nothing wrong with me just looking for a quick fix (to what I don't know), then told I was depressed, when so ill hospitalised for 12 days investigated for MS, myeloma and vasculitis all negative, neurologist said it was a psychiatric problem. Lost confidence walking and not trying hard enough in assessment! Throughout this I kept saying it was B12 defeciency repeatedly told it wasn't. Even though I had macrocytosis. Eventually biochemistry advised a holo tc and then trial B12. 4 weeks later confirmed functional B12 deficiency. Active B12 low. Now on EOD injections. During this pantomime paid privately to see a haemotologists he said very unlikely to be functional B12 deficiency as in 13 years as a consultant only seen 1 case. I am a nurse specialist, my husband was a nurse and daughter a vet we all knew what it was. Shocking animals get much better treatment than humans. My daughter kept telling them doctor to doctor to treat the symptoms and not blood results. They were Having none of it. Saw a private neurologist in Leeds after hospital discharge he was fantastic, he said I was a classic presentation of b12 deficiency. He identified neurological deficits and said I may always have some neurological deficit . And should have long term injections. Their lack of knowledge and understanding leads to incompetence. They are on a professional register that requires them to be competent. The biochemistry consultant who never even saw me had it worked out. Apologies rant over, my blood boils when I see how many of us have suffered so much. Thank goodness for the biochemistry and 2nd neurologist.
Phew Esentepe,
Even as professional of a nurse specialist, your husband was a nurse and your daughter a vet, you all knew what it was. Yes, we pay for our animals to get much better treatment than humans. Your daughter kept telling them doctor to doctor to treat the symptoms and not blood results. It just fell on deaf ears.
Thank goodness for the second neurologist him neurological deficits and that you should have long term injections.
Their lack of knowledge and understanding leads to incompetence. Great about the biochemistry consultant who never even saw you. He gets a prize but how much did you and family go through ?
My daughter was told she had MS... she has now been refused B12 injections by her GP unless she has a blood test. ... She cannot stop injections as risks permanent neurological damage. We are going around in circles, she is in tears. I buy and do her injections but I cannot do this forever. We even asked her neurologist to write in her letter that B12 was helping, yet GP still ignored.
I am horrified, but sadly not surprised, by all these responses and misdiagnoses. Thank you to everyone who replied x
I now realise that I have had PA/B12D for over 30 years. My then GP said there was nothing wrong with me. I have no idea if he even bothered to make a diagnosis. He certainly gave me no assistance. I was virtually confined to bed for months at a time and I decided I needed treatment and had no choice but to attend a private clinic for ME/CFS, managing to bring about some short-term improvement months and years later. Presumably any improvement was coincidental.
Even though I now have a new GP all recent tests/treatments have only been reluctantly agreed after self-diagnosis with me requesting specific tests to prove my assumptions to be correct. Current GP agreed to undertake B12 blood test and compare with previous results. I explained that I had never had one before even though I am in my seventies. I have had to battle for subsequent diagnoses associated with PA and it is simply exhausting.
I am extremely grateful and happy to acknowledge the very high calibre of assistance I have received from this fabulous group and it has made a massive difference to me. Thank you.
Burn Out. Depression and anxiety. My b12 level was just on the border for being out of range low. Our range starts at 150 and mine was 152. The GP never even mentioned this. She gave me iron tablets and told me to rest. I was not educated to know that 152 was super low anyways…. I eventually asked for a referral to an internal specialist and she diagnosed me with PA and AIG.
I was told polymyalgia and that it couldn’t be B12 as levels rose after injections. I took over my own care and improved with a monthly SI
My first doctor was very condescending and said she thought I did not like teaching. She also suggested depression but I knew I was not depressed. It took awhile to get another doctor. The initial diagnosis was IBS. But he kept sending me for tests and it was so wonderful when we finally found out I have PA.
Hockey_player, I would love to meet this doctor. Does she pull rabbits out of hats and make coins disappear ? How on earth did her mind even think, You did not like teaching ? Let alone it come out of her mouth.
Engage brain before you speak. Unless you have PA/B12D and Wernicke’s and Broca’s area can be impacted.
It is a high relief to receive diagnosis. Yay.
She also misdiagnosed a neck injury in spite of being a sports medicine doctor. I was in wicked amounts of pain for a couple of years before I managed to solve that issue.
Nothing.
Do you mean that you have never received a diagnosis of anything?
Yes. The only GP comment was "...your B12 is a bit low." She was too busy telling me to stop taking T3 for my under active thyroid.
Hello, BeachArt. Mine was a few things. The first time I was misdiagnosed was about 10 years ago when my wife was misdiagnosed as having Sjogren's Disease. I would go to the Rheumatologist with her and while they would discuss all the things about her disease, little did we know that it was me that had Sjogren's not her. She was misdiagnosed with Sjogren's and placed on steroids and other bad medicines, when in fact she did not have the disease at all. She got pneumonia and almost died due to that. The weird part is that even though I used to mention to him that I had this and that symptoms, it was me that actually had Sjogren's after all. So, yeah I was sort of not diagnosed with what I had. Six months before I had my diagnosis of PA, I was told that I had allergies and then another time that it was all in my head and my wife was advised that she should consider admitting me into a mental facility because it was all in my head since I looked way too healthy to have PA. Hope this helps. MJat.
Fibromyalgia
Then they found the low b12 but ignored it for 5 years and until it dropped to a severe level and again ignored it.
Not what you're looking for?
You may also like...
Just out of interest-what are ranges for B12 in your area?
change doctors after I was told my private reading of B12 was 157, then the GP (middle of...
What is supplies run out?
but without VitB12 injectables, we PA people would die off in no time. I know maybe I'm exhibiting...
Fainted yesterday, very out of things but don't know why...what more care can one take?
should I feel so awful? I'm slightly hyper (overactive) thyroid but don't know how much (verbal...
What do you think? Advice please new to this.
because I honestly don’t know where to turn and need to hear from other people re my situation....
Doctor said you can become allergic to b12. Oh please what next
What B12 injection dose do you use?
What can be done if you react to B12 injections?
