Confused & frustrated about getting a diagnosis

Since seeing my GP twice about a possible butterfly rash I am now waiting to see a dermatologist in two weeks time. However my blood tests all came back negative and my GP is not being open or informative about anything. I don't know what blood tests were done and the GP and staff there are being secretive about the fact they suspect lupus. If I hadn't looked up butterfly rash I wouldn't know, I saw lupus written on the blood test paper but when I asked the nurse what she was testing for she said I'd have to ask my GP. Why all the secrecy? What I'm worried about is after these several weeks of waiting to see the dermatologist, as I don't have the butterfly rash at the moment, that I'll go there and get fobbed off again, and will remain without diagnosis. The thing is, I feel so unwell all the time that I'm convinced I must have lupus and just want a doctor who cares enough to find out what is wrong. Will the dermatologist be able to do anything that will help me?

If I remain without diagnosis then what do I do about my symptoms which are:

Butterfly rash: I've had this twice. I've also had what the GP previously called melasma, resulting from UV exposure whilst on the pill.

Muscular aches mainly in my back and neck

All over skin itching without a rash

Dry eyes

The symptoms of Raynauds syndrome

Joint pain in my hips, knuckles

Metartasalgia which is so bad I can't walk for more than 40 minutes

Terrible fatigue which has been going on for years

IBS and intolerance to gluten and lactose

Headaches and nausea

Jaw tightness and clicking, however this may be due to the fact i clench my teeth whilst asleep

No one has even thought to ask me all my symptoms. I am considering typing all this out on paper, seeing a different GP at my surgery, and asking for it to be added to my records. Perhaps then someone will pay me some attention? What do you honk to this idea? If they know it's on my records it makes them accountable was my thinking.

Any help appreciated, I am feeling terrible physically and so depressed about it all. Without any diagnosis no one is taking me seriously.

6 Replies

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  • Don't worry about your GP for the moment if you already have a specialist appointment. Yes, write out your list and take it to the dermatology appointment and mention to them you have not been asked about all this by the GP - but the GP is a generalist, they don't have the specialist knowledge to make a complex diagnosis and the nurse/other staff in the practice certainly don't. Tests being "negative" don't mean they are not informative - for the specialist it is the overall picture that is important. If you have a rash at any time - take a reasonable set of photos of it to show to them. 

    By all means try with a different GP if you can get an appointment but I'd say wait until after the specialist appointment. I appreciate that the dermy appointment is because of the rash - but I would have thought a rheumatologist might have been more appropriate given your other symptoms.  

    And if you have a partner/friend/family member who will support you if anyone is dismissive - take them with you to back up the effect this is having on you. If necessary that is, they shouldn't be pushy - but having them with you often has the effect of concentrating the doctor's mind AND, this is even more important, they will hear things you miss or won't understand and can make notes. 

  • Hello lovejoy (great name 👍👏)

    PMRpro's reply covers everything really really well...in her clear & concise & humane way 🌟🌟🌟🌟🌟...she really is a PRO and has an insider's view of how the health system works

    So there is little for me to add, except maybe this:

    Recently there was a great discussion here about prepping for consultations...this included links to a website that gives good detailed advice about prepping for appts, and also you can download helpful guides + forms on this website - that also will help you prep 

    healthunlocked.com/lupusuk/...

    My feeling is that some of the material & advice on this website could well be useful while you're getting ready for this dermatology appt...and give you a head start on your prep for any rheumatology consultation

    Am looking forward to learning how things go for you

    🍀🍀🍀🍀 coco

    NB the link to the appt prep guide is towards the end of the forum discussion...so do look for it

  • Hi LoveJoy70,

    PMRpro and Barnclown have both given excellent advice and information in their responses which you should check out. I hope that your appointment with the dermatologist goes well. If you have a rash they may wish to carry out a skin biopsy as an additional test for lupus.

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • You could ring the doctor's receptionist, ask for a copy of the blood tests and say you will collect them next day or write a request enclosing a stamped addressed envelope.  They cannot refuse this so don't be put off by any awkwardness.

    Even if you don't know what all the results mean you will be in a better position to ask questions about the reasons they were done.

    Personally, I ask for all my test results and copies of letters from outpatient appointments from my GP surgery.  I feel more in control if I know what is happening and I can question what the results mean to me.  It is also useful as a comparison guide to what is going on in your body and if any medication is beneficial. 

    I have found it pays to be proactive as far as the NHS is concerned.  The days of keeping secrets from patients should be well and truly over, it is your body after all.

    Good luck!

  • Thanks for your replies I will certainly follow your advice. I actually called my GP again to tell her how unwell I feel, and she seems to conclude I do not have any autoimmune dysfunction based on the blood test for that being negative. She sent me for a blood test for vitamin D levels as last year this was low. So we'll see next week if all my symptoms are due to a lack of vitamin D. Wouldn't that be nice? I can't help feeling something else is going on with me for me to feel so bad most of the time. I've been in bed for a week with exhaustion, and what causes this discoloration on my face? No one has told me what this was. It's there all the time, but what about these cellulitis like symptoms on my nose that flare up? If it was cellulitis why not say so, or if something else why not say? I am going to be assertive with the dermatologist as I want answers. 

  • All your symptoms coincide with Lupus........a butterfly rash is NOT an indication of RA, however it could possibly mean rosacea or sebhorreic dermatitis as well as Lupus. From your symptoms I think it is more likely Lupus. There are a number of blood test to determine if it is indeed Lupus (all your symptoms seem to lead there). The blood tests are: CBC, ESR, Kidney and Liver assessment, urinalysis, an ANA and a DS-DNA. If the DS-DNA is OVDER 4............then you have Lupus. About 3% of the population will show a negative ANA but still have Lupus (positive DS-DNA).

    Hope I helped a little.

    Dr. S   (in the USA)

    P.S.  ALL LUPUS PATIENTS SHOULD BE ON PLAQUENIL (hydroxychloroquin)......it is proven to extend life, diminish vasculitis and alleviate symptoms. Your Dr. may want to put you on other meds as well if it is indeed Lupus to help calm your immune system.. Good Luck!

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