Functional vomiting syndrome — Scope | Disability forum
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Functional vomiting syndrome

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han233
han233 Community member Posts: 28 Courageous
Hi there I'm just wondering if there is anyone else who suffers from this rare condition, I've had it for 7 years now often vomiting upto 20 times aday with no warning when an episode starts.ive had lots of scans and seen a few specialists and still get no where.ive been diagnosed with this but dealing with it is hard 

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  • carbow32
    carbow32 Community member Posts: 115 Pioneering
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    My daughter had something similar as a teenager but it was diagnosed as Cyclical Vomiting Syndrome.  She was given anti sickness meds but they didn't work.  She grew out of in the end.  
  • Hayles7
    Hayles7 Community member Posts: 8 Connected
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    My son was 15 when he was diagnosed with functional vomiting and was sick every day for 10 months and told there was no treatment an he would just have to see a psychologist and learn to live with it. Luckily I found out about a B12 deficiency and did quite a bit of research into it and after I found our that a Functional B12 deficiency doesn't show up in a blood test I requested they do a therapeutic trial of B12 injections.  He had 6 injections over 2 weeks and 2 weeks after the first injection he finally stopped being sick. He is on B12 injections 3 weekly at the moment and hasn't been sick since. I would love to know if you find this helpful x
  • han233
    han233 Community member Posts: 28 Courageous
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    Thank you for your help, I'm definitely going to get a second opinion from a specialist and I will look into this x
  • Hayles7
    Hayles7 Community member Posts: 8 Connected
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    It's also known as pernicious anemia and I found a lot of information from the society online. I really feel for you and hope you get the answers you deserve x
  • han233
    han233 Community member Posts: 28 Courageous
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    Thank you 😀x
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited March 3
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    Hi @Hayles7 - & welcome to the community. I see you've posted a few times about this today, & you have me rather confused. My understanding is pernicious anaemia & functional vit B12 deficiency are 2 different conditions with pernicious anaemia being the most common (& which is more commonly found in those 60+ years old) being considered an autoimmune disease, whereas in functional vit B12 deficiency, there's a problem with the proteins that transport vit B12 between cells. In fact pernicious anaemia is now often known as autoimmune gastritis. I'm therefore presuming you may mean functional vit B12 deficiency, as they're different disorders?
    Ordinarily I'd think functional or cyclic vomiting syndrome would be quite separate from any vit B12 abnormalities (such vomiting isn't normally a symptom of a vit B12 problem) so would be guided by your specialist @han233
  • Hayles7
    Hayles7 Community member Posts: 8 Connected
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    Hi @chiarieds
    Yes I have commented a few times today as myself and my son are keen to help others who are suffering like he was and we are actually really excited that we might be able to help others. 

    If it wasn't for a complete stranger sharing her story with my Dad in Spain while he was on holiday then we know my son would still be extremely poorly if not worse. She was also sick every day and told she needed to see a psychologist and it took over 2 years for them to diagnose her with a B12 deficiency. 

    Unfortunately it seems clinicians all read the same information as yourself. Not 1 medical professional mentioned it could be B12 deficiency/ pernicious-anaemia because his blood tests were all normal. When I asked the doctors after doing some research I was told it 100% wasn't a B12 deficiency because his blood tests were normal!? This wasn't true because blood tests are flawed and they know it! A functional B12 deficiency doesn't show up in a blood test. Inactive B12 doesn't show up in a blood test. It just shows the amount of B12 but not if its active or not. It is extremely complicated and no doctor I have spoken to understands it but the hospital have admitted they got it wrong and he is currently receiving B12 injections every 3 weeks. 
    I found a lot of useful information here 

    https://pernicious-anaemia-society.org/symptoms/

    They specialise in pernicious-anaemia and B12 deficiency unlike GPs and Hospital Clinicians. Any doctor in the NHS are unlikely to understand but I'm trying to change that and I am in discussions with my local MP because if it wasn't for a complete stranger I just dread to think. 

    People like @han233 shouldn't be left for 7 years with this awful condition and my heart truly goes out to her. All I am saying is for her to research it because she will know if it fits for her or not. 🤞
  • Zimba
    Zimba Community member Posts: 1,873 Pioneering
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    Diagnosed with Achenbach Syndrome presents on my hands and toes, starts with a burning heat that itches and feels like I’ve been stung then a bruise appears which can last from 4 hours to 3 days. Told by consultant not a lot known about it, there’s no treatment and it’s not life threatening, just unsightly. 
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Thank you for your reply @Hayles7 - I'm completely with you in that tests for serum levels of vit B12 may not always show the problems; there are no universally accepted standards, vit B12 problems are underestimated, etc.
    I'm still asking, & I'm not trying to be contentious, whether you think your son has pernicious anaemia or functional B12 deficiency?
    I had indeed looked at the link you'd given before replying.
    I do appreciate where you're coming from, as I had to research my own conditions, & raised awareness of them here in the UK.
    I'd appreciate you providing a link that pernicious anaemia & functional B12 deficiency are one & the same thing, as I beg to differ. Sharing your experience is very helpful, so long as you're sure as to which problem you're referring to.
  • Hayles7
    Hayles7 Community member Posts: 8 Connected
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    My understanding is that pernicious anemia and functional vitamin B12 deficiency are both caused by a vitamin B12 deficiency. The main reason I quote a Functional B12 deficiency is because it was that on the NHS Website that made me aware that it's not detected in a blood test.  Otherwise Doctors just say results are normal so there's no problem. 

    I am not certain which one my son has and neither are the doctors (if they aren’t the same) All we do know is that his vomiting every day (Diagnosed functional vomiting) stopped after the therapeutic trial of B12 injections. 

    I've taken the information below from the same site I shared earlier which is full of information and personal stories:

    While serum vitamin B12 levels are commonly measured as the gold standard to assess vitamin B12 status, they may not always provide a complete picture, especially in the context of Pernicious Anemia. Several factors contribute to the limitations of relying solely on serum B12 levels for diagnosing PA:

    1. Functional B12 Deficiency: Individuals with Pernicious Anemia may have normal or high serum B12 levels, but they still experience a functional deficiency. This occurs because they lack intrinsic factor, a protein produced by the stomach lining that is essential for the absorption of vitamin B12. Even though there may be sufficient B12 in the blood, it may not be effectively utilized at the cellular level.

    https://pernicious-anaemia-society.org/blog/bridging-the-gap-b12-deficiency-from-research-to-patient/

    I don't know if @han233 has Pernicious Anemia or a functional B12 deficiency but I wanted her to have the information to be able to research it in hope it will help her like it helped my son. 
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Yes, both pernicious anaemia & functional vit B12 deficiency are both caused by a vit B12 deficiency, but, as with many disorders, what causes the problem can be different; that's all I was trying to say....they are very different, not the same.
    You link to pernicious anaemia. Yes, such patients lack intrinsic factor, which is not the case with functional vit B12 where it's instead a problem with proteins that transport vit B12 between cells. There's a problem with 'function,' but that doesn't mean pernicious anaemia & functional vit B12 deficiency mean the same thing.
    I do think we have to be wary about giving info, even with the best intent, & I don't know how you can have any certainty that @han233 has either disorder. They really do need to be guided by their specialists who can see their medical history.
  • han233
    han233 Community member Posts: 28 Courageous
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    I've seen specialist after specialist and being diagnosed with functional vomiting but I know I have been misdiagnosed thanks all for the advice I will definitely look into this thanks for your help xx
  • Hayles7
    Hayles7 Community member Posts: 8 Connected
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    @chiarieds all I am doing is sharing my families personal experience. The doctors don't know the cause of my son's B12 deficiency but we do know that the therapeutic trial of B12 injections stopped my son from being sick after being told by a "specialist " that it 100% wasn't a B12 deficiency because his blood tests were normal. I was told he 100% had functional vomiting by so called specialists. If I'd listened to them then it would be an ongoing illness for many years. 

    I don't know how you have misunderstood my comments to believe I have at any point said with any certainty that she has either disorder? 
    I have however advised her to research the information as she will be aware of her own medical history. 
    The specialist who agreed to do the therapeutic trial of B12 injections for my son didn't know anything about it but she agreed because it wouldn't harm my son as B12 is water soluble and the only way to know if it was a B12 deficiency was to do the trial. 
    Thank goodness she listened to me! 
    Of course we would love to know the cause but until specialists do a better job I'm just happy we found a cure as both Pernicious Anemia and functional vitamin B12 deficiency require vitamin B12 injections. Hence why I gave all the information for her to research 🙂
    No harm can come from me sharing our story otherwise I wouldn't be sharing it ❤️
  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
    edited March 4
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    Thanks for sharing your experiences everyone. While we really appreciate hearing how things have worked out for different people, just make sure that you're keeping your medical team informed and are making decisions about your care based on advice from qualified clinicians. That doesn't mean you can't do your own research to stay informed, but make sure you're also staying safe and consulting specialists too, especially if you're looking at treatments. Information online isn't always reliable or suitable for everyone.

    Misdiagnosis does happen sometimes, so if you're not getting anywhere with your current medical team it might be worth trying for a second opinion if you can. I know it's easier said than done in the current climate, but it's important to consult with doctors who can take your whole medical history into account when making decisions about your options.

    Really glad your son is doing better now @Hayles7

    Sorry you've been suffering so long, I hope you're able to find some answers soon @han233 <3
    Rosie (she/her)

    Online Community Coordinator @ Scope

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