Hello all. Firstly, I'm so glad I've come across this forum and have somewhere I can share my story. It's a long one so I apologise in advance.

In January 24 I started having nocturnal back pain, like most I put this down to needing a new mattress so went ahead and purchased one. By late February the pain was getting even worse so I decided to get booked in to see my GP. He sent me off to visit a physiotherapist and I was advised to do some stretches for a few weeks. Naturally I didn't agree but thought I should follow his advice. Now April I was feeling really low and sleep deprived so I bit the bullet and used the money I had saved for the family holiday to book myself into a chiropractor. Part of the consultation included some basic x-rays of my back (which showed nothing out of the ordinary). I completed 15 intense sessions but felt no better. On the advise of the chiropractor I went back to my GP and requested some blood tests. These were done around August time and the results showed a positive HLA B27. A request was sent by my GP for some more images to be taken by the local hospital but these were initially refused. At the start October following multiple visits to the GP with various other symptoms I finally got booked in for a MRI. The results came back within a couple of days and it was confirmed that I had a large syrinx running from my C7 down to T11. An urgent FTR was made for a suspected brain tumour. 

I received a call from a consultant around the 5th November and was told to expect a call for an appointment within the next 2 weeks. I then received a letter (dated 30th October) stating my referral and explaining I should make contact with the booking reference if I hadn't been contacted before the 1st November. I allowed some time to pass as instructed by the consultant and rang the provided number on the 20th November. It was explained to me that I was no longer on a waiting list and they had written to my GP asking for some U&E bloods to be sent prior to a contrast MRI Head, Cervical & Thoracic that they wanted to carry out urgently. I again waited for the letter to be received by my GP. After chasing endlessly, the letter never arrived so I made contact to the main Hospital switchboard where I managed to get through to a different Neurosurgeon secretary. She informed me that the consultant dealing with my case was no longer at the Hospital and his cases have been passed to someone else. The infamous letter (dated 18th November and addressed correctly to my GP and my home address) was thankfully emailed to myself which I hand delivered to my GP in order to obtain a blood form. I then sent the required blood test results to the email provided - this was also sent to Neuro by my GP. I was devastated to be told this hadn't been received when I was sent an email on the 31st January explaining this. Again, I was worried my reply would been missed and my blood test results are holding up my diagnosis. 

Last week (8 days ago) I contacted the hospital PALS department for help and explained my situation. I've received an auto acknowledgement but still no answers.

I cannot believe the NHS have targets of 28 days to diagnose or rule out suspected cancer when I've been waiting 126 days. The pain and lack of sleep is 1 thing. But the stress and effect on my mental health is unbearable. According to the NHS app I am on waiting list, but my referral was apparently made in December not October. I've got so many unanswered questions but I don't know where to turn to next...

Apologies again for my essay!