Mri mysostis confusion

[Tim_Thorpe]

. Feeling totally confused 😐 had stroke 2011 have aps symdrome strongly

Then about 2 yrs ago diagnosed with lupus sle or lupus like symdrome by prof hunt at st Thomas put on aziophrine then this year in March had a terrible flare and had some investigation done at guys hospital by dr fernando. An MRI showed some mysostis on my left gluteal muscle. Since March 31 have been referred to have muscle biopsy.1st cancelled as dr fernando hadn’t put a bridging plan in place (as I’m on wafrin)2nd one was cancelled as it hadn’t been referred properly and the 3rd one was cancelled 4 hrs after I had a text to ring surgical team to book in appointment for pre op !

Dr fernando called me nxt day and said they had cancelled biopsy due to the fact that now they think there is no new mysostis just old on MRI

CANT see why it’s taken 4 months to come to this decision 😐

[lupus-support1 Administrator]

Hi Tim,

I assume you mean myositis or inflammation of the muscles. I have dermatomyositis as part of my SLE. Dr Graham RV Hughes didn't bother with a biopsy on the basis it wouldn't tell him anything more than he already knew - and why put the patient through an unnecessary and painful biopsy.

To take 4 months for this decision, doesn't reflect well on the standard of your care. One of the problems is the difficulty of seeing a consultant; the time between appointments is usually months & months; the rotation of junior doctors means you see a new doctor each time who are on a rotation and thus the patient, you, Tim, have to go through the same process only to find another junior doctor with whom you have to go through the same again and again and again!

Next appointment, insist on seeing the consultant!

Best wishes,

Ros