Diagnosis

[Christie22]

Apologies if I am not on the right place I ve been unwell for some time aches pains muscular and joint , some gastric issues , fatigue and tiredness , . Visite the dr blood tests undertaken liver APL out of kilter as is the kidney function ultrasound scan two days ago . Now the bloods undertaken also showed positive for ANA on two separate occasions ...I am obviously concerned this could be lupus or another auto immune condition but I need to get the diagnosis to get help and try to stop the damage . I think I need a ENA panel blood test and perhaps anti histone ....I’d be grateful for any thoughts this seem to come in phases and when at my worse I have strange temperatures too ....thanks for reading 🙄

[Serser]

Hi Christie22,

Has your GP referred you to a rheumatologist yet? It sound very much like what you need.

X

[Christie22]

Not yet saw someone three years ago diagnosed fibromyalgia which I believe happens often . The liver and kidney function really concerns me had some skin issues too photosensitivity as you say next appointment I will impress the need for referral it’s so frustrating we have to get so much worse before someone listens . Thanks for your reply

[Supul in reply to Christie22]

Hi Christie

I had similar symptoms 4 years ago. Night sweats, chills, feverish, utter fatigue, digestive issues (first time in my life), skin rashes (first time), muscle and joint aches and pains, headaches, sore, dry eyes, nose and mouth...

I was told I had 2 lesions on my liver (why, no one ever said), significant allergies to metal cobalt, and nickel (why, no one ever said), and was diagnosed Sjogrens Syndrome ?lupus.

I have helped myself more from reading here on HU, reading books, joining support groups, than I could ever know from GP.

Rheumatologist did treat me with hydroxychloriquine but it made me very unwell (suits many people though), so, I now choose to take vitamins and minerals.

I did worry about liver. No explanation, no follow up appointments.. then, one day, I realised worry was not going to change anything, so I trained myself to stop worrying. I choose to live, day at a time, grateful for what energy I do have.

I do follow advice of dermatologist though, threw out make up, toiletries, perfumes etc.. I use prescribed skin wash n moisturize, shampoo.

My skin is 99 percent healed. My digestive issues 95 percent healed on gluten free, fresh produce, vitamins and minerals.

[Supul in reply to Christie22]

Sorry, pressed send too soon.

I use blephasol lotion for eye sun sensitivity and wraparound glasses. Also, factor 50 sunscreen advised by dermatologist. I so cover up!

I rest when I need to. I drink a lot of water. (No alcohol, previously had 2-4 glasses wine weekend meal out).

I walk often.

Hope some of this helps.

[whisperit]

I agree with Serser, you probably need to seek a referral to rheumatology, or at least a clear explanation from your GP why this is not indicated. The LupusUK leaflet may be a useful guide to organising your thoughts so that you can identify what might be relevant auto-immune symptoms. lupusuk.org.uk/wp-content/u...

x

[Christie22 in reply to whisperit]

Thank you appreciated I certainly intend to do so

[Christie22]

Well I ve made an appointment with the lead gp at my surgery and contacted the local private hospital after determining a well respected rheumatologist works from there if I can’t get things moving through the gp I’ll take my blood results and issues privately to achieve the diagnosis I need . Thanks everyone for positive and useful tips I ve accessed the things mentioned . Made a list of issues today although have to say not in a “ flare “ mode presently but I was surprised when I read the list back ,

Fatigue

Breathless on occasion

Skin flares with sunlight

Joint and muscles aches stiffness pain

Digestive issues

Occasional temp raises

Headaches

Chest pain left side

Slight nausea

Raised ALP a liver enzyme and fatty liver

Affected kidney function both determined by blood tests

Nuclear autoantibodies recorded as positive

Makes you think when you look at it again it’s been insidious but I am determined to find a diagnosis

Thanks again

[Christie22]

Rhumotology appointment , update

he doesn’t think it’s lupus but then he’s now said I don’t have fibromyalgia and they diagnosed that three years ago lupus is notoriously difficult to diagnose but a new test in America is due here soon .. He has said a antihistamine to dampen down things because I do have a overactive immune system but it’s also used for anxiety etc I suppose it’s dual use . To keep an eye on kidney and liver issues with GP and avoid gluten . So perhaps a way forward for now he does think the stresses of my life are impacting upon my immune system ... stress in my life has been extreme husband committed suicide 4 years ago and my son was diagnosed with leukaemia in 2016 ongoing

I am ok about these considerations ,,,will think about using the medication but will have to do so for six months . Drug recommended is hydroxyzine whilst I appreciate my life has been stressful I am not filled with anxiety just unwell headaches recently have been terrible , fatigue , stiffness , photosensitivity . Would appreciate thoughts .x