Help with Diagnosis during the currant outbreak - LUPUS UK

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Help with Diagnosis during the currant outbreak

TELESTEVE profile image
6 Replies

Help with diagnosis

My Wife has recently been told by her GP , he thinks she has Lupus, she has a rash on her hands and her fingers are blue , I have noticed that mentally my wife is not herself in that she wanders and gets confused, The Doctor sent her for an xray which showed a shadow on her lung, she also had the freeze blood test wich has not come back after a month, he wanted another xray and a MMR scan but with the Corona-19 outbreak she has been put back on the list, My Question is would it be beneficial to pay for an xray and MMR scan at a private clinic to aid her doctors diagnosis and therefore her treatment assuming there capacity has not been taken up by the NHS

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TELESTEVE
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6 Replies
whisperit profile image
whisperit

Hello TELESTEVE

Not sure there's a straightforward answer here.

Lupus/SLE is a systemic problem where your body starts producing antibodies against your own tissue. Its normally diagnosed by a combination of physical symptoms plus a blood test (the main ones are called ANA and dsDNA)

You can find out a lot more about diagnosis if you go to the "home" page here and look at the free leaflets on the right hand sidebar.

In addition to this underlying condition, each individual person will have their own collection of "specialities". In some, their lupus "specialises" in attacking their joints; in other people, it might go after their skin: in others, it has neurological effects; and in still others (like me), it takes a dislike to their lungs. The chest X ray and MRI ordered for your wife are probably to help her doctor work out if her lung symptoms are part of the lupus or something else again.

As to whether you want to try for a private referral at the moment, if it was me, I probably would. After all, the alternative might be having to wait with a lot of uncertainty and worry about what might be causing it. But you shouldn't necessarily take my advice. I'd suggest speaking with your GP to clarify exactly what s/he hopes to find out from these procedures and whether s/he is willing to press on with other treatment and/or referral to a rheumatologist (the normal thing for a possible lupus diagnosis) or other specialist meantime. x

Acknslash profile image
Acknslash in reply to whisperit

Thank you for your comments , The wife has seen the rheumatologist and had a blood test done (freeze) but nothing has come back after over a month

happytulip profile image
happytulip

Hi, I agree with whisperit.

However, if you are forking out to go private you need to make sure you see a top notch private Dr who can interpret an MRI and treat as appropriate. Not much point in spending the money to get limited care.

What part of the country are you in? You'll be restricted by the CV-19 travel, risk Vs benefit aswell.

Keep posting on here and asking questions. You'll get alot of good advice.

I'm sorry that you are going through such a tough time and during a pandemic.

Acknslash profile image
Acknslash in reply to happytulip

Live near Hull ,East Yorkshire ,

happytulip profile image
happytulip in reply to Acknslash

Hi again, unfortunately that is an area that I'm not familiar with so wouldn't be able to recommend anyone. It might be worth starting a new thread asking is anyone can recommend a private hospital or Dr in the Hull area?

Lots of useful info will come your way on this site. The members are full of knowledge and the admin team at LUK might be able to help too. It might be worth giving them a call or emailing them?

eekt profile image
eekt

Welcome TELESTEVE, great replies from whisperit and happytulip.

You have a knowledgeable GP who has spotted possible autoimmune disease, and it would be a good idea to have a treatment plan (if it is lupus) as soon as possible.

There are guidelines for lupus* and Table 6 lists all the initial assessment tests (including a chest x-ray). Your GP might not know of the guidelines as they are fairly new, so perhaps you could ask him/her to do all the tests listed and that will give a fuller picture for the rheumatologist together with the MRI?

A terrible thing to go through at this time, all the best!

Stay safe xxx

*academic.oup.com/rheumatolo...

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