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Vasculitis UK
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strange symptoms in head with dizziness and am in hospital but being fobbed off. no tests so far, worried

i am in hospital. MRI brain done.

i have heaps of co-morbid conditions and been over to UK under the E112 agreement. i live in ireland.

i came into a private hospital with severe rushing and gurgling on left side head and ear, this always brings a headache on, again left sided. i have felt dizzy and at night i have had sweats and getting chilled. the side of my temple and sinus have felt tender, in the last two days of the attack my legs went numb and extremely painful from knees down.

i come in and they see no infection and want to send me home. i pursuade them to let me stay and see if i can get these 'attacks' sorted. the UK named a few conditions this could be, but here they just say its migraine and are fobbing me off.

i have sjogrens, fibro, crohns, and a neuromuscular degenerative disease, all i know this isnt migraine. the rushing is mad and can stop in an instant as if you are turning off a tap, the rest of the symptoms usually stop then and i am over this attack. what can i do. i am so desperate. nothing is being sorted in ireland, this now is ongoing since 2012.

in 2013 i see on a scan i had a stroke, noone told me i had and saw this on my notes in 2016.

i also saw inpatient a'e that i had raised troponin T and was to have mri, no i never had that.

to me i feel consistently fobbed off. in the uk they made suggestions, at top centres but alas come home with these and i am dumped a few days in bed and then discharged.

how can i go on like this.

i need help.

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Although I had very different symptoms, I was initially treated in a very similar way. My husband jumped up and down and eventually got me referred to the national Hospital in queens square London. They were very persistent, conducting many tests, including MRI's and lumbar punctures and eventually a brain biopsy, until they found the problem.Although the final result was not what I wanted to hear, I was eternally grateful for a diagnosis.w

Wobbly Pat

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Hi Anngrumps

Sounds like you have had a really tough time and a poor standard of care from the health service. Im not sure about the best thing to do but wanted to voice some support.

Could you make a complaint to the health provider in Ireland which is failing to follow up on the suggestions that the experts you saw in London made? And include in your complaint what you want them to do to resolve matters. That can get things moving sometimes.

Ive had a similar situation and had to keep going private as the NHS in Wales have been useless. tbh I should have made a complaintg a long time ago and am going to now. Though its hard I know to fight when you feel ill and exhausted.

wishing you all the best.

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Maybe the my symptoms may help,I have aorta Vasculitis I constantly have rushing in my head I lost my central vision in my right eye and get terrible pains in my knees and legs the muscles feel like they are burning, can hardly walk the main pain is when I am relaxing or lying in bed? feel like I have run a Marathon

It started off with terrible head aches thought it was Giant cell Artits and nuero sarcoids done 6 lumber puncture two biopsies brain and temporal 9 Mri scans wasnt, until they done a pet scan thet discovered My aorta was inflamed done cyclophoslmide and other forms of treatment but couldn't control now I am on Rituximab the steroids eased the pain of the meningi in the head The NHS has been marvellous in particular my consultants Miss Burness and Miss Noonan at the Walton Neuro centre Liverpool

I am Dizzy light headed and disorientated all the time and breathless, the symptom's cant really be resolved, A healthy diet is good to try and prevent strokes lay off sweet and fatty foods monitor your blood and cholesterol, the disease is rare nobody seems to address the problem just have to take life easy you get used to living with the Pain, people don't understand and it is difficult to explain you sometimes feel you are kidding yourself and need to get on with things but what happens is you get overwhelmed and panic attacks and that is my body is telling me to stop take it easy, hope this helps you. there is no cure you have to live with it the best you can and watch diet ;)

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