My rheumy just rang me. At home. In person. My flabber has never been so ghasted.
After running through a few questions, he told me that he is ordering an urgent muscle biopsy, MRI scans of my thighs and electrical conductivity testing. And he is asking the neurologist who discharged me after the initial assessment last July to see me again.
"What has prompted this?", you ask (as well you might).
It was my "very high" CK levels. And how did we get to know of these levels?
It's because last month I told my GP that I should have a CK test done.
Good job someone is on the ball.
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whisperit
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It's an absolute disgrace the way you have been treated but at least hopefully now you will get the help you need and deserve x
Well that’s vindication - although it’s pretty scary as vindication goes?! Always a mixed blessing when we are suddenly taking very seriously due solely to our own persistence. Did your rheum mention the Addison’s at all? X
No, he was preoccupied by the issue of myositis, so all our discussion was about that - was I OK about having a muscle biopsy ( said yes, fine, but Ive just seen a video of it and ooer i wish i hadn't) , whether I had been told if my leg metalwork ruled out MRI investigations etc. Anyway, seems like I'm going to be extending my medical education once again. x
Well I do know someone with Sjögren’s (runs a BSSA group I’ve attended twice) has Myositis diagnoses by muscle biopsy. She certainly didn’t say it was awful. I know that I did look up nerve biopsies when I was trying to work out if I might ask for one to exclude Mononeuritus Multiplex - and was relived to learn from vascular doc that these aren’t really performed these days as EMGs have superseded them 😬
Wow!. No wonder your flabber was ghasted!. This could be a breakthrough you desperately need , but we always have to go thru a lot to get it and be our own detectives so well done you. That neurologist was so wrong to dismiss you!. Glad you'll get a retrial with him. Best of luck for the tests. Look forward to your next instalments!. X
Fingers tightly crossed for you Whisperit. Health is tricky for me at the moment, helped mum thru her hip replacement but paying for it now. How's your mum?. Harry hedgehog sends his regards. X
Aw, sorry to hear you're suffering atm, but v glad you were able to help your Mum out. It's been a bit fraught here as my Mum developed severe pain in her back which we feared was a secondary. It was a great relief to get a phonecall from her GP last night to say the scan showed it was just a lumbar fracture due to osteoporosis (it's not often that it's good news when you find out you have a broken spine!)
Hello to Harry. No sign of Hedgewig lately, but the bats are out and about again x
Hi Whisperit, it's stressful dealing with our own health without having parents health problems added!. As you say you shouldn't be grateful for a lumber fracture rather than a secondary!. You all had a horrid wait for results. I hope your mum has good pain relief as they can be painful!.My mum 's op went well and she was discharged quickly and then developed a complication!. Had to be re-admitted. Luckily all sorted out well with an extra two day stay in hospital. She's been home a while now and is doing so well mobility wise. It's transformed her and I can't keep up!. Hope hedgewig appears soon and mind those bats!. Hope they're garden trained!. All the best with these tests. Really hope they come up with treatment and answers for you. X
I've had the tests. Easy peasy, unless you are a wet lettuce, which we all know you are not after the torture you've been put through by those who took the oath to "do no further harm."
You have to keep on the ball with people. I'm so pleased to have medical training otherwise I doubt I'd even have a diagnosis. Good on you for getting the CK checked. I hope its improving? Are they planning on an USS of your kidneys??
Thanks HT, So far, no other news on tests, but I imagine there should be some other bloods to be done, at least. As you say, having some clinical background is a help, but don't you get fed up with the way this all consumes your whole life? I'd rather be thinking about something else! Hope you're feeling OK atm x
Yup, its a full time job guiding the doctors with my care, and stopping them cocking up my routine that is actually working!
Dont get me wrong, some of them are great but others need to be on the receiving end of a power point presentation about auto-immune disease, dysautonomia and chronic pain!
I've even raised the question about having a synacten test as I've only managed a 2mg drop in my pred in 2 years. So your experience is influencing my care too.
I'm doing OK(ish) at the moment. Pacing myself but also pushing myself a bit more. I'm trying to avoid stress as much as possible. There are a few people on broomsticks who are swooping around me trying to cause a bit of bad mumbo jumbo so I'm taking avoidance action, looking after No1 for once because with me stress is the biggest trigger! X
There is a kind of good side, potentially, maybe, in that it can train you to look after yourself and no to put up with time wasters - in life generally, I mean, not just doctors
I agree. I am feeling more positive at the moment as I am painfully achieving a little more, as long as I pace myself. I'm surrounding myself with good solid friends who are of top quality and by spending time with them I am feeling more positive, although shattered today!But its raining here so today will be a chance to catch up on rest, housework and Netflix.
I've noticed that I get quite tetchy before hospital appointments now. I always used to have someone come with me but I've started to get quite emotional and cranky if someone else is there. I've decided that with my next lot I will go alone because I dont like the person I turn into if I am with someone else, stronger alone. But very grateful to everyone for the support I have.
Sort of good news in that it might provide the answers you desperately need and deserve but sort of bad in that there might be a muscle problem (but actually I’m sure you’d rather know at this stage and get treated?) and absolutely shocking that it’s only come to light because of your persistence and ability to keep your head when all about you are losing theirs!! 🙄
Your persistence and the sudden call from the rheumy in person and to you at home leaves me gumswizzled old chap. I really hope you've got them on the run at last. Well done x
"The struggle continues!" as I used to chant on those marches back in the 70s. "Victory is certain!" Still chanting. Not so much marching. Thanks Lupi x
This is exactly what I have to do, I have to ask my GP to test for things. I had to ask for a DEXA, Bone Density scan because of cancer treatments. I should have had it ages ago. Now I'm at high risk for fractures! I do despair
Setting jokes aside, how is your urine these days? Ok, no need to tell the whole forum about it, I would suggest to take pictures of it and show them to your Drs or report any unusual color/odor, foam etc.
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Advise on possible autoimmune conditions please :)
Good news not so great...and I'm really angry.
Uctd diagnosis taken away 
