Saw the orthopedic registrar and got my mri report today. They did the whole pelvis, but as this clinic is a pre-surgical clinic for potential hip and knee replacement patients the whole picture was not assessed, just the parts relevant to them. It was clear from my first seeing them some two years ago that I was nowhere near needing a hip replacement, but that is their only criteria for seeing me. The registrar today even said he couldn't see any arthritis, which showed I think his inexperience, I've had it diagnosed from a bone spot scan and senior consultants and osteoarthritis never gets better. What the report did show though in as far as the areas they were looking at, was inflammation, some in my right side trocjanteic bursa, my gluteus medius right insertion, and the insertions of both the hamstrings, in this case worse on the left. He has sent me for a steroid injection to deal with the bursitis on the right side, but it really is the least of my problems. Then he said he was discharging me from the clinic, as there was no more they could do. However he wants my GP to refer me on to a specific rheumatologist. (In this country now only GPs can make referrals - it's all about budgets and a complete nuisance to everybody, plus it gives GPs even more superpowers...end of rant). He took my point about symptoms popping up all over the place and said this could be some systemic inflammatory response. I've always tested negative for rheumatoid arthritis but he said that did not mean there was not an inflammatory condition going on. To me it makes sense, it would explain a lot of stuff that is going on in recent months, from my eye problems to the weak hands episide to feet that swelled so much my shoes didn't fit in recent weeks. Systemic Lupus pops up again and again as a potential diagnosis, but the blood results are always negative, and like MS, I don't think I fit the picture. I hope my GP will make this referral, maybe a good rheumatologist can pull some of these 'random' symptoms together. It was the right thing to discharge me. All that clinic does is hip and knee replacements. Really I should have been referred to a rheumatologist from the outset, once my first x-rays and symptoms were in. Again it was the stereotyping of my age and me complaining of hip related pain that led one uninterested gp to write a vague letter to this clinic. Don't know what to make of this registrar, but I hope he does a good letter, not dismissing me, and gets me seen. I didn't warm to him, but then he was the first to make this move on my symptoms. GP appointment tomorrow, I'll ask him directly for the referral, I have the name of the consultant. Again don't know how he'll take it. Maybe he thinks it's not necessary or I'm seeing too many people already....Always look on the bright side of life... Also want to ask him for more pills, which will be difficult, and we have to do this disability report.
Then there's my eyes, if anyone is still awake and reading this. The pain is not really going anywhere. After phoning her leaving an agonized message, the consultant's secretary phoned me back and said maybe a doctor would talk directly with me tomorrow to assess me some more, or at any time I can go to A&E. She couldn't help any more - she is a secretary, not a doctor, and there were no doctors around that day in her department. We chatted for a long time, but there was only really one answer, either put up with it or come in. Quix implied there may be slight inflammation from the optician's report, so maybe it is worth double checking on this. The double vision can't really count as an emergency any more, it just is. Just need to eventually hopefully find the cause, but accept that it may never go away. I just have to keep the wandering eye working with these exercises, even as an adult it seems parts of your sight can shut down. My dad's eyes were often the but of family jokes, but what he had was in reality devastating. He is now registered blind. Had he had access to orthoptic intervention as a young boy he could maybe have been treated.
Again a bit fed up that with such amazing detail on this MRI with contrast so little has been analyzed. But then my other consultants in neurology can access the same pictures, or I can get a copy myself. I wanted to know if there was anything showing on the bladder? Any more blood vesses tumours? Nerve impingemtent etc? Bit this was a hip and knee clinic.
So another tiny step forward has been made. Systemic inflammation is on the cards now. Needs to be confirmed, and then if so understood. It's nice that the whole picture is beginning to be looked at, as long as the referral gets made and neurology and neurosurgery chip in. I will push again now, as there is a more resonable direction to push in.
It's all now in the hands of my GP. I can't move until he gives the go ahead, and I only have him, or nobody. So far he's done right by me but the fear is always there. I hope he helps me tomorrow. I hope he understands that all I want is to get better. Will make sure I'm calm before I go. There is a lot riding on his yes or no to certain questions and requests and I need to deal with it. Tonight I will make sure I get enough sleep.
This is more of a journal thing than a question, but wanted to post it, as others may have thoughts on how things are developing, or not. Only 45 minutes sleep last night, so that's my excuse for rambling. Even though I always ramble. Maybe others here have had similar experiences? I don't read as many posts as I'd like to. Too many things that need to get done!