Hi everyone, I was suggested to post on this forum by a friend from another forum.
I'm 24 years old and have been seeing a rheumatologist for 14 years for ankylosing spondylitis. For at least the last 4-5 years I have had constant pain in my lower back and buttock region when sat down but it has always been tolerable and more of a nag that I just put up with. Over 1 year ago I was forced to change doctor and this is where my problems began. I live in the UK and in my area the rules on the NHS recently changed meaning I must attend the nearest hospital to my home. To put it nicely my new doctor is more than useless and her quality of care if awful. I did appeal and plead with the higher management of the NHS to allow me to still see my old doctor because we had built up a very good relationship over 13 years and he knew me and my condition very well.
My new doctor hasn't even got my notes or no history of my condition. At the first appointment with her she stopped my medication at the time as that hospital does not offer it and instead insisted I must take another medication. I was not happy about this but there was nothing I could do and just accepted it. From Feb 2014-Aug 2014 I went without no medication for my AS. I quickly become very unwell and by around April/may I was bed bound and in extreme pain. My GP put me on steroids which I am still currently on.
Around Oct last year things started to improve slightly and I began to gain my mobility back slowly, but one day suddenly when walking around in my home my back just gave way, the pain in the bottom of my back was so intense that I literally had to throw myself to the floor and lay down, since that very day I have had extreme lower back pain when sitting or standing or walking, I also have extreme buttock pain only when sitting but no back or buttock pain when laying flat or on my side. This pain has taken over my life, I have had to give up work and move back in with my parents. I can virtually not walk even when using crutches because the pain is so intense and I'm beginning to have trouble moving my right leg, it doesn't want to move or do as I tell it to, its just dead. I have told my doctor about this pain now for just over 6 months and she has still not done anything except send me for an x ray which I was unable to complete due to not being able to lay complete flat. She has not once examined me and just asks me to point where the pain is. There is no alternative doctor to see in my area and I'm stuck with her.
I recently paid to have an MRI scan but my GP says he is out of his depth with the results and suggests I talk with my rheumatolgist, but she cannot see me for 4 months and I cannot wait that long. Would anyone have any idea as to what type of doctor I would be best paying to see privately? It would also be great if anyone with a similar experience could let me know what type of treatment they went through and what the results were like. From what my GP has told me there are 2 lumbar discs indenting the spinal cord and something about spinal signal being interrupted. The scan also shown problems further up in my spine such as its began to fuse in a forward position, lots of bony spurs in multiple areas and 3 root nerves are compressed in my neck.
I'm sorry this is a long post, any help would be greatly appreciated. I'm fed up of waiting and being messed about by my doctor on the NHS so I'm trying to figure out who I can see and pay for my own treatment out of savings which were meant to be for a house deposit.