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.
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Bfb65
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Right with ya! My journey has been 6 and a half years of the same. And...the neurologists didn't even accept the psychological assessments that stated there was no psychological issues causing my symptoms. This is so awful that so many of us are having this struggle. I was diagnosed with MS, then not, then ???, then Myasthenia Gravis...then not..now Mylagic Encephalomyelits and FND. I too have symptoms of MS and MG.
I am so encouraged and happy for you that your GP fought for you and then you had the help of the Nurse Consultant. Sounds like you are in the UK, where there are more medical professionals that have knowledge. I am in the states. I sought help from more than three neurologists without any support or help. I have a good dr now, and he is supportive, but still ME and FND? At least he didn't say Conversion Disorder.
Research has proven that unless a patient receives a firm diagnosis of a neurological condition in the beginning, it takes a very long time for the patient to be taken seriously and get a diagnosis. The suggestion of a psychological disorder follows the patient, resulting in disrespectful and dismissive attitudes. And..drs are more unlikely to go against the original assessment by other neurologists. And..I was told that drs think a patient is "dr shopping" to get a diagnosis.
Also as you have stated, it is very difficult to get reports deleted or changed.
We all need advocates to support us as we continue to deal with the daily challenges of this illness and speak up for us with the medical community..
Once again we come up against lack of understanding and research. Yes some people do Dr Shop and have a health anxiety that strips them of living in the present. BUT IT CAN'T BE ALL OF US.
What really gets me annoyed is that we are told we are the ones that know our bodies best. Yet, how often do we get the sideways smile that seems to just be a patronising look. You can be assured that if the boot was on the other foot, the medical fraternity would soon be chacing the truth.
I recommend the Neurosymptoms .org site to give the most recent opinions regarding FND. Print off the main page and take it next time you have an appointment. Time for Doctors and especially Neurologists to realise they understand very very little of what is going on. Think they put epileptics in straight jackets not so long ago!!!!!!!!!!!!!
Try to focus on the positive things in your life if you can, not easy when you are overwhelmed but good luck and best wishes.
I have been suffering from neurological dissfuntional dissorder for 5 years, I was diagnosed 2 years ago, and am symperthetic and agree with all you have to say, I have a brilliant team of helpers around me, 3 neurologists, a brill GP, mental health team,and excellent councillor, who I have been going to for a year. Also I am going to sevenoaks hospital for rehabilitaton, Thank you for highlighting our plight, has been hell for me to type this, glad that I am not alone.
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