Continued chest pain and other stuff

Hi everyone, this is my first posting on here. to know where I am at and why I am asking, here's a potted history I have been ill since 2002, same story as many, misdiagnosed, mine was supposedly m.e but I was never convinced. I was finally diagnosed with B12d and started loading dose in 2014 after a nurse accidentally (luckily for me) requested a B12 check along with my iron and folate. I am still been dismissed by the doctors and having learned about my diagnosis i opted to self inject as per BNF guidelines for neuro complications. I have had huge problems neuro wise that have never been take seriously. I have poor balance, cannot feel my foot placement and have loss of sensation and grip in my hands. My low folate was recognised when I first went to GP with pins and needles,cramp and electric shock sensations in my hands in 2010, the locum dr was great and as a result i had nerve conduction tests which showed deficit yet the surgery I am at have done nothing. I paid to see a neurologist privately because of all this neuro stuff in 2012 and before B12 diagnosis and despite taking all my nerve conduction test results he said that there was no explanation for the deficit or issues i was having. I did have an MRI of my neck but nothing else. I now know differently and despite every 2 days of injecting and now on weekly I have had no improvement and I recognise that I am one of those people who were misdiagnosed and the deficiency was not picked up early enough to have prevented this happening. Soooooooo now to my questions. . . . .

1) Would a full brain and spine MRI show and prove the problems that I am having neuro wise are down to Subacute combined degeneration SACD?

2) Since 2007 I have been experiencing central chest pain and on 3 occasions they have blue lighted me to A+E, I have then been dismissed as having strained my intercostal muscles when I absolutely haven't. I haven't been blue lighted since 2011, not because I have no chest pain but because I keep getting dismissed so I try to ignore it. However the severity is worsening with each attack (about twice a week and not upon exertion either) and I am so very scared. My Gran died aged 63 after her 4th heart attack, my uncle was 58 and just dropped dead with no symptoms. I have read about elevated homocysteine levels and B12 deficiency. How the hell do I convince the doctors before I too drop like a stone, i have aske dfor these levels to be checked but they said that they dont do those bloods?

Any help and advice greatly welcomed

thanks x

10 Replies

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  • Hi OceanWaves05 are you saying that your doctor won't test your Folate level or have I completely misread you post?

    "Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine".

    Vitamin B9 (Folic acid) University of Maryland Medical Centre

    I'm not a medically trained person but there are others on here who will be able to give you good advice

  • Hi thanks Clive. I have the folic acid sorted now. I know when mine is running low as i start getting cramp pians and electric shocks in my hands. My regular GP's woud not prescribe folic acid lasttim ei requested a blood test because my level was 8. I have read much re folate and B12 nd pretty much become an expert. Hoewever I saw a locum and explained why B12d patients need levels in the top 3/4 of the so called normal range and she has now added it to my regular meds. So that side is fine. My concerns are the continuing and worsening chest pains that are being dismissed as imagined when i have a family history and the possibility of it been down to b12d and homocysteine and also re sacd will it always show up on scans?

  • Have you thought to join the Pernicious Anaemia Society? - it costs but £20.00 for a year's membership and the current chair Martyn Hooper (MBE) suffers from Subacute combined degeneration of spinal cord.

    Maybe if you speak with him he can give you some advice.

    The Pernicious Anaemia Society

    Level 4, Brackla House

    Brackla Street, Bridgend

    CF31 1BZ U.K.

    Tue-Wed-Thu-Sat 8am-12noon

    info@pasoc.org.uk

    +44 (0)1656 769 717

  • Hi again Clive, yes I am a memer of PAS but never messaged or contacted Martin, I dont like to trouble people but I have to do something to get proof and also I am worried beyond worried re the worsening chest pain

  • It's got to be worth a try and he is such a gentleman who has been through the mill and knows what it is all about.

    I've had P.A. for 45 years and I'm still "clivealive" at 75

  • The PA also has a specialist support nurse (but that seems to be around Children and women's issues mainly)

    pernicious-anaemia-society....

  • Have you had an ECG done at any time ? I think that would be worth pursuing.

    Also, are you on any other meds? I was on blood pressure tablets ( only 5mg) but had the most awful reaction, the worst of which was chest pain.

    Only other thing I can think of is if it happens again, go to A&E and refuse to leave until they investigate it.

    GPs in this country are beyond belief.

  • I'm not saying that this is your problem, but I was "blue lighted" to A&E for chest pain. This happened more than once. Eventually after heart testing, and scans for a pulmonary embolism, it was discovered that I had a hiatus hernia and that acid reflux was causing my oesophagus to go into spasm. This was always worse if I was stressed.

    I do hope you can find out what is causing your pain. I know how scared I was until I got a diagnosis. The treatment was lansoprazole capsules to reduce my stomach acid. This does have a bad effect on B12 levels, but my GP has agreed to six weekly injections.

  • Another possible cause... I also had chest pains, sweating, shortness of breath.. Was unstable angina. An angioplasty and 4 stents latter, all fixed.

  • Hi,

    "also re sacd will it always show up on scans?"

    There's an article on SACDSC in PAS library section on website.

    pernicious-anaemia-society....

    "read about elevated homocysteine levels and B12 deficiency. How the hell do I convince the doctors before I too drop like a stone, i have aske dfor these levels to be checked but they said that they dont do those bloods?"

    Link below mentions homocysteine tests.

    b12deficiency.info/b12-test...

    I thought GPs could order these tests. Tests for homocysteine are available privately.Could you ask for a referral to haematologist /cardiologist?

    Is Gp aware of your family history of heart disease? In past I have written letters to GP when i had a query over my treatment.

    Link about writing to doctors about B12 deficiency.

    b12deficiency.info/b12-writ...

    As you are a PAS member, are there any local PAS support groups near you? they may be able to pass on info about helpful GPs/consultants etc.

    pernicious-anaemia-society....

    Blog post about heart disease and B12 deficiency

    b12deficiency.info/blog/201...

    I think it's worth contacting PAS, hopefully they can point you to useful information.

    PA

    "I was finally diagnosed with B12d"

    Did Gps try to find out what was causing your B12 deficiency?

    Were you ever tested for PA (pernicious anaemia)? the IFA (Intrinsic Factor antibody) can help to diagnose PA although it's not always reliable. People can have PA even if IFA test is negative.

    pernicious-anaemia-society....

    Uk b12 documents

    Flowchart from BSH Cobalamin and Folate guidelines

    stichtingb12tekort.nl/weten...

    BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines

    I am not a medic, just a person who has struggled to get a diagnosis.

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