LUPUS - MRI

[JanW]

I was told just over a year ago I most probably had Lupus Erythematosus as all the signs pointed to it, and my Dermatologist arranged for three biopsis, one on the rash on my back, one on the arm and the most important one under my arm - I had and still have two very large red rings under each arm which have since grown going up part of my arms. The rash on my back which I'd had for donkeys years was Lichen Planus, but the other two were said to be inconclusive, you can imagine my frustration. When having the three biopsies the doctor doing them said it is likely it might be inconclusive and you will need to have another biopsy. I said well couldn't you do two biopsies then one under both arm she said no I was scheduled for just the one. Have to admit after the two inconclusive biopsies and the six weeks of no excercising - my joints painful really missed it and the Dermatologist saying I would need another biopsy taking a larger piece of skin I was feeling rough and really not up for another biopsy so cancelled it.

Since then I have been cut adrift, no Rheumatology or Dermatology appointments at all from my hospital, at first I didn't mind but now as my illness seems to have progressed - red rash all the way across the neck and chest area and a rash that seems to have gone to my neck nose and cheeks I am worried. I called my doctor and asked her if she could get me back in with them, she said she would see what they said and get back to me, she didn't but I got a letter from the surgery saying Rheum and Derm were so busy I would have to wait nine months! I am now thinking of having a private MRI done to see if it will show up Lupus so I get a definite diagnosis. Has anyone had an MRI to diagnose Lupus and if so did it show up? Sorry to go on, just concerned my health not great now.

[PMRpro]

While MRIs are amazing scans they can't do everything - and I'm fairly sure they don't diagnose LE unless it is affecting specific organs. They are pretty expensive too.

[JanW in reply to PMRpro]

Interesting I did wonder thanks for your reply.

[Lupiknits in reply to JanW]

It may well be worth going back to your GP and requesting an expedited appointment. My rheumy appeared to overlook me, and my GP did that, acknowledging that GPs simply did not have the training and knowledge without specialist input. My rheumies have similar nine month waiting lists otherwise.

[JanW in reply to Lupiknits]

That's a good idea, think I will ring them and say if they have any cancellation's I could fill one.

Thanks😊

[whisperit]

I've had several MRIs in the past months. As PMRpro says, they don't diagnose lupus per se, but they do give you good information on certain aspects of your symptomatology. In my case, to assess the amount of inflammation and scarring in my lungs and heart, and as a general look around at some of my other organs to see if they too were affected.

Since you are looking for a SLE diagnosis, I doubt that a private MRI at this stage would be the first step to take - a rheumatology consultation might be a better bet.

I was in a similar position to you 2 years ago. The waiting time for a first assessment was 8 months, so I decided to go against my principles and seek a private opinion. It cost about £200 and I was seen within 10 days. Because I chose to see the same rheumatologist that I would have been referred to under the NHS, after the appointment, I was taken onto his NHS caseload and started treatment immediately. If you want to consider this, you can ring the relevant consultant's private secretary and check out the possibilities before committing to anything.

PS re-reading your post, I see that you cancelled an appointment for a further biopsy. As you have discovered, these days, some specialties consider this equivalent to discharging yourself from their service, so you go right to the back of the queue again. Any time you don't feel up to an appointment, I'd recommend checking that this does not mean that you are removing yourself from the caseload! x

[JanW in reply to whisperit]

Sound advice always welcome thanks.