Mri confusion about mysostis part 2 lol

[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 did reply to this in Part 1!

A biopsy will only confirm what is already known ie you have myositis or inflammation of the muscle.

If you are worried, I would speak with Dr Fernando.

With good wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Don’t think dr fernando could organise a drink in a brewery to be honest taken 4 months and known the wiser what’s going on then I did in March when I had flare . Losing the will to live lol

[lupus-support1 Administrator in reply to Tim_Thorpe]

Is he - dare I ask - a consultant?

[Tim_Thorpe in reply to lupus-support1]

Dr fernando has now decided to do totally nothing now and just to refer my dr Rose at kings collage hospital

She told me on last Friday that they had cancelled muscle biopsy and was having general meeting about me and then decide what to do nxt but probably just raise my aziophrine up and put me on other drugs I presume steroids

Waited for months for nothing to be done just pass the buck on to dr Rose

Great 👍😤

[lupus-support1 Administrator in reply to Tim_Thorpe]

I am sorry to read this and no wonder you feel upset and angry! It’s taken months to do nothing! Why didn’t they adjust your medication? The biopsy isn’t dependent on alleviation of symptoms?

I don’t know what to suggest other than express how you are feeling to Dr Fernando! When are they deciding about your medication? Perhaps say you don’t expect to have to wait another 4 months!

With good wishes,

Ros