I was wondering if anyone here has had experience with the neurological and the immune system affects of PA? I was diagnosed with autoimmune B12 deficiency when I fell unconscious and gave myself whiplash back in 2016. My level of B12 was 88. Sadly the 3 years of symptoms beforehand were not considered and I was placed on 3 monthly injections rather than every other day until no further improvement and then 2 monthly.
I tried to support myself with additional B12 supplementation through various means and shortly after seem to have an improvement in my neurological symptoms but also strangely my immune system seemed a little stronger. By then I started to experience rheumatological symptoms and in 2017 tested positive for ANCA and in 2018 tested positive for sticky-blood APS with 2 out of the 3 antibodies involved in co-agulation. Then I started experiencing right sided chest and soon after that coughing which has not gone away in the past 2 years and in fact is getting worse.
I know that when I improve my B12 supplements so that I feel better with my neurological symptoms the rheumatological symptoms become worse. But whenever I finally get appointments at the hospital for the rheumatological issues my blood tests never seem to be high enough to receive treatment. I am in this frustrating place of increasing coughing and chest pain and other things going on but the doctors don’t seem to look beyond numbers on a computer screen. In fact one doctor was going to put it down to either fibromyalgia or depression just to get me off the list. But now I have further symptoms and yet again the chest x ray is normal so I am treated as imagining things yet my fiancé sees me cough and be in pain .
Has anyone struggled to get secondary conditions diagnosed because of poorly managed PA and the affects on the immune system?
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RoseFlowerDew
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Yes I think it's quite common. The more I read about peoples experiences.
Fibromyalgia is a term used alot when a collection of symptoms have not been diagnosed.
My daughter had undiagnosed b12 deficiency/PA with macrocytic anaemia . Shes convinced ad mant others are that this led to P.o.t.s vertigo and severe muscle and joint pain. It took years with a diagnosis of fibromyalgia before a correct diagnosis was found.
She also has HED s (Ehler danlos)
Hindsight a wonderful thing.
So keep nodding in with investigation s if you know something has been missed.
Labels ate often not nice but explanations and labels can bring better treatment to cope with the debilitating symptoms. Also to be taken off the mental health route if it must be in tour head !!!
I had a cough that I could never get rid of for a couple of years before having b12 injections. Most nights I would have to try to sleep almost sitting up because of coughing and reflux heartburn. I am asthmatic and was put on a stronger inhaler, extra asthma medication, nasal sprays/decongestants and painkillers, but still I was using my reliever inhaler frequently as I struggled to breath and coughed like a smoker although I have never smoked.
My asthma is now under control and I very rarely need extra medication and my cough is gone. My b12 was extremely low when they finally tested it and I believe it had been for years.
My husband visited the GP for two years complaining of total fatigue and weakness. Eventually I asked if he had had a b12 test. He had not and this was done showing b12/folate deficiency. Never given a proper loading dose,
Weight loss and symptoms continued. All scans and tests negative. I requested a review of care treatment and dosage, and received a letter accusing me of insulting behaviour ! Adding that my husband should seek a new doctor. Re registered and the same attitude followed. With a stern message saying there is no Pernicious Anaemia. I heave witted to them requesting the basis fir this statement. No reply to date. There is so much ignorance about this insidious condition throughout the Medical Profession. With much unneccessary suffering. Time to approach Parliement again. ,.
Ha Ha Ha not only the FA label I have the FM one too !
I am no self injecting to treat my ow B12 but still ealy days but as you said slight improvement. My Dr is sending me yet again to another nero - Oh joy I wonder what this one will come up with.
Big hugs, iv'e been where you are and know how frustrating it is.
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Starting SI without PA or B12 def diagnosis. Anyone else done this? 
diagnosis and symptoms
B12 neuro symptoms appear worse Advice before GP appointment please
B12 Deficiency and PA have exactly the same symptoms and effects
