Were you misdiagnosed by your GP in y... - Cavernoma Allianc...
Were you misdiagnosed by your GP in your initial consultation?
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yes
yes
no
GP? They know bugger all about cavernomas. My hospital team misdiagnosed me as having an AVM. Most neurologists know bugger all about cavernomas too ;-).
I take it that's a "no" then?
Yes! Sort of.
Yes
Yes
NO - After first seizure they found a bleed and thought I had had a stroke. Following second seizure they found a bleed again but refereed me to a specialist at St George's in tooting who correctly diagnosed my cavernoma
But the fact that the GP thought it was a stroke.... She/he may have been in the right ball park but ... Thanks for answering the question.
I was taken to hospital with a suspected seizure or stroke. They did not think that there was anything else wrong with me. It was my own GP who asked for further tests to be done, I was sent for an MRI which showed up that I had a cavernoma. So yes the diagnosis was wrong to start with.
yes
yes
GP had me admitted to hospital genuinely thinking it was a stroke - HOSPITAL CONSULTANTS STATED IT WAS STROKE FOLLWED BY SEPARATE BRAIN HAEMMORHAGE. Neurosurgeon said it was total misdiagnosis. It was a Cavernoma. 99% of GP's have never heard of it!!!!
CA UK are working on educating even some neurologists who cannot identify the condition. The trouble is that some neurologists, and especially GPs, take a dislike to be informed by a patient support group. Most of our expensively-produced literature - paid for by members - ends up in the trash!
yes - it took 20 years for it to be diagnosed - GPs have very little knowledge of the condition and regard it as a "specialist" subject
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Thank you ros 55. Please join us - it's free - cavernoma.org.uk
Yes, misdiagnosed initially. My GP thought i had Labyrinthitis and so was sent home with tablets. I referred myself to hospital and was told i had wax in my ear and sent home with paracetamol and olive oil??? My third referral (in the space of 3 days) i was told i had a stroke and was being sent to another hospital for an angioplasty. By the time i was in the other hospital i was told i had a tumor and lastly (after nearly two weeks in hospital) i was told it could be a cavernoma but they were only 70% sure?????? My diagnosis; brainstem cavernoma (pons). My consultant has been brilliant tho.
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Join us. cavernoma.org.uk. Its free Sparky. And you can use that pseudonym if you want. Best wishes, Ian.
No my gp referred me immediately after first Diplopia and I had gamma knife surgery 6 months later. Full follow up mri monitoring .
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Thank you. Are you a member of CAUK.? Here is the direct link: cavernoma.org.uk/membership...
Sophie Eldridge, the CAUK Administrator, will be happy to answer any of your member-related questions. admin@cavernoma.org.uk
yes I went to my gp numbness in face and opposite leg...He said I had bels palay leg no resemblance to face as I said same feeling
Yes. My first occurred in 1992 and went undiagnosed until the second bleed in 2005 which was promptly diagnosed with MS. Not until 2006 was I correctly diagnosed upon many second opinions! These bleeds were multiple cavernomas, not one bleeding several times so I was a bit of an anomaly at the time.
I presented at A@E because the dizziness was particularly bad. It was the doctor there that told me it was my ears. I have no medical support at all and any information I have about this condition, I have got from Google . I asked my G.P for information but was told that it is rare and they have not come across it before. I am currently waiting for the results from the second MRI done at the end if October
My G.P initially thought I had a stroke so referred me to the stroke clinic. Correct diagnosis following MRI. I suppose my point is, that the doctor at A@E knowing that I had a carvernoma still said it was my ears clearly it was not