Hi all not written anything for a while, as been feeling bad, physically and mentally. I have been on reading what you have been saying, some made me laugh some made me cry!
Anyway, in the space of a week I saw a new Rheumo, and a new GP that I have only seen a couple of times. Well it was really eventful seeing them both, firstly the Rheumo arranged for my hip and knee to be x-rayed. He was only going to do the hips, but I asked him to do my knee as there have been no tests on my knees since 1993, AND he actually listened!!!!!!!!!! Thankfully the x-rays showed no serious damage, but he did say that my cartlidge in my knee was wearing away. I mentioned that the painkillers (tramadol, co-codamol, pregabalin and citalopram, a antidepressant with pain relieving qualities) only took the edge off, he said he didn't want to give me more pills because he thinks I don't need anymore side effects. So he is referring me to the pain clinic, the first to even mention this in the 30yrs that I have been suffering!!!!!!!!!
Secondly the new GP seems to be listening!!! She is really concerned about the way that my words get muddled and the violent jerks that are getting worse. So rather than being referred to the neurologist as the waiting list is long, she has booked me in for a brain scan!!!! She said it is most likely down to this dreadful disease, but she has this niggling feeling in the back of her head that it could be something else.
So maybe after all these years, being told it was growing pains, no idea, and one prat telling me that everyone gets aches and pains but some people can deal with it better!!!! I got 2 people that actually understand the disease and what I am going through.
Hope everyone is as well as can be