Thank you all for taking the time to reply they mean a lot to me are very encouraging.
I am bitter not angry I have seen seven neurologists in the past 2+ years. I will give you a brief history as to why I refuse to see anyone.
- First appointment was a private referral. The neurologist had no medical reports or records with him. After asking for a history he said the reason for my medical symptoms is childlessness if I start a family all my symptoms will get better and to help you with your invalidty benefit claim I would support a diagnosis of CFS/ME. He then asked me if I had internet access if I did he would be able to give me a link to website of his friends which explains my diagnosis in more detail. I got a blank envelope with www.neurosymptoms.org noted on it. (No mention of benefits was made in the referral as I was already receiving benefits nor were benefits mentioned at the appointment. why would I need help with claiming them?)
I asked to be referred again to this neurologist after a couple of months as he came highly recommended, again a private referral. The neurologist came to call me didn’t say my name again “You again, what are you doing here. I gave you a website I can’t help you.” If the neurologist was aware they can’t help me then obviously they were more interested in the money for the appointment. Common sense would have been to write back to my GP saying they can’t be of any help.
- Second neurologist did checks found some abnormalities during the appointment prescribed medication for spasticity ordered an MRI, based the lab report the MRI was normal but according to the neurologist I have some white matter disease. My brain is 30-35 years older than it is, she also noticed some abnormalities but could not say what they were caused by. She showed me the images I left the consultation with no answers being discharged back to the care of my GP. I went home with the impression at my age I’ve started to develop Alzheimer’s disease.
I was referred back to this neurologust by neurologist number three unfortunately due to the diagnosis made by the neurologist who is part of the same trust they also couldn’t find anymore abnormalities it was all made up etc.
Third neurologist said if I had taken copies of records documenting details of attacks then they would be able to diagnose as I had been thoroughly investigated by other fields of medicine. They said they would expect a local neurologist to be able to deal with my case it’s unfortunate that I had to travel to the hospital. They said if I wanted they would write to the second neurologist advising them of how to manage me. It would also save me travelling to the hospital I agreed.
Fourth neurologist told me that based on the past letters it’s highly unlikely I have any inflammatory disease but based on history an inflammatory disorder can’t be ruled out. He convinced me to have a LP results back showed systemic inflammation despite the results I was promised an appointment to discuss things further which I now realise was a subliminal way of getting my consent for a LP.
Fifth neurologist said they will try and chase up on my results and confirm whether or not I had systemic inflammation ordered an MRI scan was advised to keep a file due to being a complex case. I was advised I’d be seen again. I have to give credit to the neurologist for correcting the mistake that the fourth neurologist had made. I was always being told by my GPs I’m making up things if the neurologist has written to them my csf was normal then it’s normal. The fifth neurologist wrote to my GP confirming that I had been telling them the truth about my csf results.
Follow up appointment the neurologist refused to go through my medical file because the letters were not in chronological order and I had more than one letter in a sleeve. They didn’t even look at the file I was discharged with no answers labelled a complex case.
Sixth neurologist did tests etc said the only answer to my medical problems and symptoms is multiple sclerosis there are about 10% of people with no abnormal test results and they are diagnosed but unfortunately those 10% are not me.
Seventh neurologist wanted to explain to me my symptoms are real and that I’d have to learn to live with them. They had seen my complaints and though they would see me because they are the clinical director for neurosciences. I told him about my attacks etc they said they didn’t have any evidence. I gave him my file at the end of it which they said I was telling the truth all along but unfortunately they can’t make a diagnosis or recommend any treatment options as they had no powers.
I have been thoroughly investiagted by other fields of medicine I’m not going to list them.
The only thing that neurologist’s care about is money. I can vouch for the report that the UK is the third worst country in Europe when it comes down to neurology. I wouldn’t be surprised if next report reveals the UK has the worst neurology services in Europe.