Thank you for taking the time to look at my page and read my story! 

My experience, if you like, a little bit of what I hope to come from this & I am always open to new suggestions & ideas:

Last summer (2017) I went for an evening run where I had to return home early due to a pain in my leg which was unbearable. I visited the Drs & the walk in centre on numerous occasions where I was told a total of 9 times (on different occasions) the pain was down to muscle problems or a pull in it. After numerous visits I went back to my GP where she agreed to refer me to the MKATS team at Leigh infirmary (the muscular skeletal team) where I was to spend months under their care. During my time with them, they did tests on me to rule out certain things like ligament & muscle damage, all came back negative. Every result contradicted another as the pain would be in a completely separate place to where they was feeling and testing which completely baffled them and me. Because of this, they sent me for an MRI scan on my right leg, where it was found I had the disease Avascular Necrosis, an extremely complex disease that because of no blood getting to the joint, destroys the supporting bone and eventually kills it completely so my patella bone is incredibly fragile and likely to shatter at any impact. It is also incredibly painful to the point of me having to take strong medication throughout any day as my bones are dying, I also use crutches and a leg brace to take the pressure off it. Every human being naturally creates and re creates bone, that's what we do, but without blood, the body cant, therefore I cant. The only known cure for this would be a knee replacement, however because of my age the professionals do not want to rush into this as I'd need at least a couple more and we want to try other options like a bone graph first which would have to be in December (this is what I was heading towards). I have had physio, numerous pain killers and tests on this leg, nothing can be done, there is no other fix for avascular necrosis, it destroys everything it touches (reminds me of the nothing from The Never Ending story!!) 

Recently, I went into hospital (Salford Royal) as I was in a world of new pain that knocked me quite sick, going down my leg, I spent 2 days there where they ran tests on my hip bones as I could not lift my leg up at all which is unusual and shouldn't happen regardless of the AVN in my knee. They released me having found nothing new, just put it down to the AVN in my leg playing up. However, they called me back 2 days later, where they told me to come in immediately as they had some new findings. The Dr proceeded to tell me I have AVN throughout my pelvis, in both my hips. It looks like it has been there a while un diagnosed as my right hip bone is completely dead as well as the top of my femur bone completely destroyed and distorted (yours looks like a dog bone, mine looks like a sunk in tea cup!). My left side is not as bad where they will have to operate asap to save it which includes drilling a hole in my bone, using my stem cells and bone marrow to strengthen it, this will put me in a wheelchair for 3 months to recover as I cannot put pressure on the right side which is completely irreparable. Getting totally fixed would mean 1 knee and 2 hip replacements for me and a metal plate in my right leg to support my femur bone as its distorted, meaning I won't ever walk properly again, no exercise (good excuse hey!!).. And obviously all these things cannot come at once so this is a very long journey and a rocky road ahead. I am also fighting for further tests on my whole body and everyone who has symptoms of this, as once you have AVN you are prone to it, however that is unlikely, its in most of my lower body now so I would like for everyone going through this to be given the option at least of full body testing, I have heard of and know of people who are now living in hospital due to the spread of AVN it is a progressive aggressive illness. Acceptance is key with this and although I know this is a horrible nasty disease that attacks the human body horrendously, I know today I have the tools to deal with it and more importantly raise awareness because this isn't something even Drs know much about, infact most specialists I see have to pass my case on because they simply haven't seen it before and therefore don't know how to deal with it. It has certainly changed my life getting this diagnosis and dealing with so much unknown and uncertainty on a daily basis, that's why there needs to be more research, more answers and more reasons for people with the symptoms to go to their Drs and say 'hey, maybe I need an MRI' because without one you're just in a world of pain with no understanding of why! If anyone is experiencing anything like I have mentioned, please do not suffer alone, come and have a chat, a talk, send me a message about what the next option could be or where to go and I will do my very best to help.