Pernicious Anaemia Society
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Relationship between long standing PA symptoms and hydrocephalus

I was repeatedly misdiagnosed and then finally diagnosed with PA at the end of November 2012 after 2 rather difficult years with symptoms. B12 level at 109. After undergoing a myriad of tests, they also found that I have enlarged brain ventricles and a lumbar puncture proved that I have very high CSF pressure. Does anyone know if PA which can affect the brain - can have caused this hydrocephalus?

2 Replies

hi reading this is very interesting. what is hydceph? and what is csf?--- your b12 is very low even tho they consider that normal- it is such a bloody joke, so sorry to hear you have waited so long, what w will they do now?---also what symptoms did you have in your brain? reason is for 2 years i have been trembling/twitching nerve fluttering and the most awful sensations in my brain, it is pressure building up until it feels that my head will burst open, then after a few minutes it gradually declines but then comes back,it feels like i have even got swelling of the brain so there is not enough room in my skull or that my nerve endings are imflammed or braim inflamed but it dos feel that there is not enough room in my skull and the pressure pain is intolerable. i saw a prof recently with a page of symptoms an dphotos of my changinge face, he was quite astounded that 10 half years that this has gome on for. the tremors i have have he wonders wht a is attacking my nervous system and that he has said it is compatible with encephalitis-- what is the diff betrween hydroceph and enceph? also i am wating for a 2nd head scan as the first one came back normal 2 years ago and the crap neuroligst wrote to my gp and said i needed a psychitrist. i told the prof that too! he said NO YOU DONT!. I HAVE wait a further 16months for the brain scan and cervical scan. my b12 is692 so i 'have enough' but do i absorb it? i want the active b12 as i have hashi and kidney and spine and adrenal probs too so i really could be as low as yours ,w who knows? let me know how you get on and what they ddo for you good luck. xx


Thanks! - csf = cerebral spinal fluid hydrocephalus - is in layman's terms - water on the brain

It appears that my body now produces too much csf which causes pressure on the ventricles in my brain - making them enlarge and expand. A 90 minutes MRI in which they took every possible angle as well as shooting dye into me showed this.

My B12 is now at 500 from initial diagnosis - it's still not enough as I still have symptoms but I am managing that and also now taking folate.

But I am wondering if the extreme B12 deficiency which I had before diagnosis for about 2 years could have caused the hydrocephalus.

Your story sounds dreadful. Truly. 16 months is too long to wait - I would try to go private if you can.


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