Hello, I've just found this forum after doing a lot of research online. I've been dealing with a variety of symptoms since I was a teenager. I'm now 32. my B12 has always been borderline. I've been taking supplements (1000mg) every day for the last 6+ months. It's a long story so I'll summarise.
Seen by cardiologist at 14 for 'dizzy spells'. Diagnosed low blood pressure but nothing else. Since then into my 20s, my thyroid, b12, vitamin D and folate have been monitored (mainly because I pushed for blood tests). I've been diagnosed with generalised anxiety disorder, depression, functional neurological disorder (episodes of ataxia), IBS, recurrent labyrinthitis, palpitations, possible PCOS, migraines, sleep paralysis, hypnagogic hallucinations. I have constant bouts of fatigue. 6 months ago I ended up in A&E struggling to walk and talk. We thought I'd had a stroke. When the symptoms started to subside the doctor said it was all in my head, even tapping her temple and told me to get up and go home (I'd come in wheelchair bound). I've had a 10 minute phone conversation with a neurologist since June who's 'care' has been neglectful to say the least. I had taught myself to walk and talk again with no support and now just have stroke like episodes instead of constant symptoms. I have two under 5s and no family local so this has been no mean feat. With some pestering he eventually sent me a letter with a website saying I had FND. No support offered, nothing.
I have booked a GP appointment for later this week and I'm going to ask to have my B12 looked into again and probably my thyroid. Does anyone have any advice. I know myself. If I am feeling anxious or depressed it is because I have been feeling unwell for 20 years and I am fed up. I have so much to live for but at the moment I feel like I am surviving and dragging myself through the days. I'm so tired. Everything hurts all the time. I'm desperate for answers and if anyone here has any thoughts on my case I would be eternally grateful. I'm losing the fight in me and I'm scared.
Written by
unamariececilia
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"When the symptoms started to subside the doctor said it was all in my head, even tapping her temple "
"functional neurological disorder"
I'm so sorry that you've had this experience especially as your B12 results have been borderline for years.
From personal experience, I can say it is possible to have severe b12 deficiency with an in range B12 result. Most of my results were well within range so I could not get treatment despite over 40 different symptoms, typical of B12 deficiency.
I had similar experiences eg your symptoms are due to depression, psychosomatic, functional neurological symptoms, you have hypochondria etc etc......
Hi una,Sorry to read your story. I too have had similar diagnoses, FND, fibromyalgia, IBS (which was coeliac disease), medically unexplained symptoms , depression etc etc. Sleepybunny has covered where to get further help. I do know that if you are taking supplements that they can skew the results but I don’t know what the time frame is, sorry.
Maybe for your appointment be prepared, even write in advance with a leaflet, guidelines and your symptoms. Say how your quality of life is affected and how difficult it is to care for yourself let alone two young children. It might be worth pointing out that your B12 has always been borderline and you would be grateful of a trial of injections.
I’m really sorry to hear what you are going through . My experience with GPs has been horrible too . It is really scandalous that the medical profession is so very ignorant about B12 deficiency / Pernicious Anaemia . I was “sent on my way “ when my B12 was low ( 150) and I had several B12 symptoms . I consulted a private GP at a Nuffield hospital who found that I had P.A. . ( Positive intrinsic Factor antibody test) This test does not always reveal the antibodies — 50 % of the time unfortunately . If you have P.A. supplementing with B12 tablets will not help you as you have experienced . B12 injections are the answer . . You can try to persuade your doctor to give you loading doses , but it will be difficult , because you have already been told that it’s all in your head . In your place I would opt for self injecting if you fail . I was forced to do this when , although proven to have P.A. , my G.P, would only give me an injection once every 3 months ,and my symptoms started to return very quickly after a very short time . I now self-inject once a week , and keep very well . The great thing is that even if you don’t have P.A. , vitamin B12 injections are totally harmless , and you cannot overdose . Also they are very cheap . I speak as someone who has been self-injecting weekly for over 5 years This keeps my b12 deficiency symptoms at bay . . We are all different , and some people are fine on 3 monthly , and others need daily , or anything in between .
. I do wish you luck with trying to get B12 injections from your GP. though .
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