Oh my goodness, did she happen to say what it "DID" fit in? Do you have a neuro already????? Have you been tested for Lupus?? Forgive me if these have been answered....
Big Hugs to you...
I've had 2 neuro's over the last 4 years but they concentrated on my myoclonic jerks, when I mentioned all pains etc they just said your muscles are bound to hurt because of the jerking, my jerks are in my torso and spine, that does not explain my muscle and joint pains in my arms, wrists and hands.
I think because the myoclonus is visible they concentrate on that and can't see passed it.
I've had lumbar puncture, MRI brain and spine, CT scan, bloods for anti gadantibodies, Lyme disease etc I am assuming Lupus would have shown up in the tests.
Rheumatologist didn't say anything useful, I was upset during consult and all she offered was rehab for muscles and asked if I had had counselling re: myoclonus.
I've been discharged from neuro, he told me 'no cause, no cure' for myoclonus go home and live with it...which made me really upset, basically he gave up on me.
The rehab is starting next month, but they won't be doing any tests to find out cause of my issues so at the moment I am banging my head on a brick wall with no help other than maybe pain meds, botox injections and physio. It won't help because I've had physio and one day my jerks were really bad and the physio said I can't help you, as long as you are doing the jerks it is undoing any work I do.... Aaaargh!
Still smiling though, not going to let it get me down LOL.
Hope you are doing okay.
Big hugs to you...I am sorry...Docs can be so ugggsss.
I love your spirit...I hope the rehab will help.
Thanks for the hugs and yes doctors are ugggsss!!!
Have a good weekend.
I have you checked out M.E./CFS MYCLONSUS are common in this.
I found this guys journey with M.E. you might like to read it, it took him years to get a diagnosis of M.E.
ALSO my friend has fibromyalgia and she has all your symptoms lol. Mind you though she has tender points, do you have tender points if not it cant be FMS.
Check out M.E. though because a lot of your symptoms match. (and MS actually).
I've just left you a message re: your MRI and then found you'd sent me a message, how nice is that. Thank you so much for giving me the link, I've not been tested for tender points but if it helps everything hurts lol. I'll go check the link now and have a read, I knew you can have myoclonus with MS but not with Fibro so that is something new and helpful to know.
Wishing you well for tomorrow.