Am I right in thinking that someone here has a Cavernoma? If so this might be of interest to you.

[210272]

ow.ly/ham450DnCvE Cavernoma Alliance UK - CAUK

[eviedotty]

I have 3 cavernomas and am a member of Caulk who give fabulous support so thank you for the link. These cavernomas am told although I have been given the diagnosis of FND they cant tell me what symptoms I have which are FND and I have no symptoms that appear to relate to FND because of the cavernomas. I am still fighting to get a , well any kind of explanation really of why I have been given the FND diagnosis when what I live with is very clearly and evidenced through MRI scans belong to the cavernomas

My fight now is with the NHS Ombudsman and a lawyer who tells me I have a very strong case for misdiagnosis but I now need the FND to be removed as it is affecting healthcare for the cavernoma symptoms. It is my intention to keep going until this can be removed as I have it in black and white that I have never been assessed for FND but still they on the back of an episode of dystonia which is directly related to the cavernomas decided that I have FND but agree that it was an episode of dystonia and nothing to do with FND but it is FND....you are a wise person if you can make sense of this....

i could not get an x ray for covid lung and I could not get a CT scan for a fall were I was knocked unconscious because of the FND and am presently working with my own GP to recover from these incidents. She has to work blind without the scans/tests and CT scans and so life has been less than easy these past few months to say the least. I add by working blind we dont know if I have delayed concussion or a bleed on the brain from the cavernomas caused by the fall. I also have been getting medicated for Covid lung without an x ray to deal with the symptoms of covid lung congestion

This has now had a serious impact on my life given the symptoms of FND does eliminate my hard fought for life with dystonia for example a risk assessment for the pool would now have to take into account that I may become paralysed so theres no chance of getting back to any exercise or even out the door on my own so this diagnosis has effectively left me house bound...with no known symptoms or care plan as there is no symptoms to care for but the doctors have made the assessment and insurance policies for public travel/leisure activities etc would be void should anything happen if I am out alone...