todays apps

Well today I saw physio but my bloody bus was late (swear driver was peddling it!),so only had 15 mins consult. Start programme and hydro next week. Can't have any ultrasound just yet as if there is a possibility of growth occurring in my bones still then it is contraindicated so again need definitive answers before we  can move forward.
I then saw my rheumatologist who was rather defeatist, and who can blame him,  he too now queries the nature of anything rheumatologically going on or at least anything he can help with. He seemed to recongnised what I told him of my differential diagnosis, and said that as there is so little known about it , so basically go with the physio at the mo and keep him in the loop. I said I was so frustrated and he agreed it has been a very long road for me with my joints. I  don't feel in the slightest bit surprised by his words and am not bitter, despite banging on about getting him to help me......what can he do.......wave a magic wand. I wish! So he wished me well and that was that.
I'm feeling generally pissed off about this whole conditon, it wouldn't do to have something simple would it oh no, I have to be different.  My fasting insulin better come back elevated otherwise we're all bloody confused. Still least I have found another 'expert'shoul i need him, and I suspect I will.
Thankfully I have found another patient, however her story not great. She still has questions as to what actually occurred within her body a number of years ago and  still has struggles. I'm lucky to have reached out to her given the rarity.
ta for reading x
 

Replies

deleted_user
deleted_user

WOOOOOW hun how pants is this... I guess we don\'t expect to be faced with suffering from something so rare that they don\'t know a bloody thing about it. Remember I am here if you need to rant to. Thinking of you sweetie. xxxxxxx
molehands
molehands

Thanks Vic, it is a bit pants really. I feel like the only thing that would help my knees at the mo is more arthroscopy ( keyhole of a joint) . Last 2 times after a good tidy up and washout they felt great for a while, lessened the crunching and pain for a while. Last steroid shot into the knee joint did nothing at all. Really want to figure out why my hips ache so much too, I don\'t think its the actual joint but more the upper femur and the femoral head. I do wonder if there is growth there.
Smaller joint are easier to deal with,by that I mean I can cope with the feet ankles and hands giving me agro. Ideal world I\'d get a full mri to examine the joints but can\'t see that happening until further down the line once a firm diagnosis is given , maybe then they would be willing to give one to try figure out the bones......yawn......waiting .....waiting......waiting...... lol!