Question from a member of the fb group if anyone can help or has experience, please

"Hi everyone, is it possible if you could help me. Yesterday I was told that I have atrophy/amnesia due to the brain damage caused by the amount of time that it took for the docs/consultants to dx my second vasculitis" . (which is CNSV , secondary to HSP which was diagnosed at 14 years old)

7 Replies

  • Hi Suzy,

    I have CNSV (although diagnosis based on Neurologist's experience) and have also been noted as having atrophy in the brain 'beyond that expected for my age'. When I asked if this was an indicator for Alzheimer's , my neuro said that the reason for this wasn't fully understood as there has not been enough info collected from MRI's yet. He did not say it was part of CNSV. The last 2 scans I have had show that the atrophy has stopped getting worse. This has happened after a while of taking prednisolone to manage symptom flares as they occur but this of course doesn't mean that that is what has prevented the atrophy developing. I would definitely recommend that the person in question asks their doctor more about the reasoning behind the statement and perhaps why they are saying it has caused the amnesia specifically. CNSV causes all sorts of confusion in the thought processes. Not much help, I'm afraid, but maybe a start. :-)

  • Thank you, I will pass on your comments. Susan

  • No problem. I am happy to discuss further if required :-)

  • I will try and persuade Michelle to join the HU group. Thank you

  • :-)

  • I don't know Susan, save that my 'uncategorised' Vasculitis, caused massive-and I do mean massive-brain damage. The doctors/consultants do honestly wonder how I am still alive which, if I'm honest, I find quite amusing really! Granted I now have to be 'looked after' but hey...I'm breathing!

    Just a thought though you are still alive, as well-if you weren't then I have an extremely good psychic link! Unlikely? Reckon so. I guess you must be alive, after all!

    Kind regards to John please AndrewT

  • Thank you Andrew :-)

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