Its been 4 years since My condition started after suffering pneumonia and a stroke and seeing numerous Neurologist who sent me back to my GP, I was sent to Sheffield last year and after a 20 minute consultation and with no tests they diagnosed me with FND (Frankly No Diagnosis), and they said it was from stress or depression and I should have CBT which would put me right, Sheffield said that they didn't want to see me again and left me in the care of my GP.
My GP thought that it was rubbish but we decided to see a Nurse Consultant who specialised in Psychological disorders. After a 2 hour assessment she informed me that my symptoms were organic and I wasn't suffering from any kind of stress,PTSD,depression. She could not understand how Sheffield Neurology department could label me with FND when no psychiatric assessment,
She agreed that they give people the FND diagnosis when they cannot explain your symptoms, she told me that I had symptoms of MS,MG,Parkinsons, but it could take years to show on scans and blood tests which one I have. She also said that the FND diagnosis is a sticking point when you go into hospital as doctors think it is a malingers diagnosis.
When I go into hospital and they ask me what is wrong I tell them that I have a Neurological Movement Disorder and that they have to treat my symptoms until I get a positive diagnosis. This was the advice I received from the Nurse Consultant.
She also confirmed that I have onset vascular dementia which Sheffield wasn't interested in, an I have had a peg fitted as I am unable to swallow food with out choking.
With the help of my GP we have had to fight to get proper care, so don't give up tell the Dr's what is wrong with you and if you don't agree with what they say tell them or get a second opinion. Even use the Pals system to get the treatment you deserve.
You are also entitled to a health advocate who will help with reports and question referring to your test and they will also ask the Dr,s to explain how they came to make your diagnosis. You have to see your GP about this service.
We continue to fight for everything due to the report that was sent by the Sheffield Neurological department which they will not cancel.