Getting a diagnosis

[fgade]

Hello everyone, I am new here and would like some opinions from you all if that’s alright.

I have Raynaud’s syndrome and vitiligo, it just started suddenly a few years ago. However recently I have become pretty tired most times and my joints and feet started aching badly. I called the GP and she arranged a test, the blood test came back as strong positive ANA, and some other test got done . On calling the GP today they said no further action required.

I know I am not feeling right in myself and believe something is up from my symptoms , what do I do now? If GP says no further action required ?

Please any suggestions would be appreciated as I believe I have the lupus and just need to be diagnosed if this is the case

[Spanielmadlady]

Hello and welcome.im new here too but I'm not new to the lupus diagnosis journey.if I was you I'd write down every symptom,feeling,sensation, ache and pain even if you dont think its relevent.then request a referral to a rheumatologist and go armed with your notes.they will do more in depth bloods like DS-DNA,immungloblins and complements.dont expect a quick fix or answers straight away as it all takes quite some time....5 yrs in my case.you need to be both strong and patient.good luck xx

[Makimon]

Hi there, sorry that you’re going through this. It must feel really concerning that the doctor has said that. I would definitely speak to your GP as Spanielmadlady has said. Again, take some notes of your symptoms and ask for a referral to rheumatology as your result probably does need some further investigating. If your GP won’t do this ask to see another GP at the practice. Keep going until you get that referral. Sadly, it’s taken me years to get anywhere with my diagnosis. But I have the correct treatment now even though I don’t have a solid diagnosis. Hope you can get some answers soon x

[fgade in reply to Makimon]

Thank you

[puffyface]

Go back! You have a high Ana for a reason. It could be a number of things...but unlikely to be nothing...particularly if you’re feeling bad.

[fgade in reply to puffyface]

Thanks for coming back. Yes I will ask for a referral tomorrow with the GP as I have an appointment. I don’t know why or how she could just say nothing to worry about with a strong positive ANA and I have so many symptoms

[Hairsresser10]

Hi

I spent over a year going to the GP about symptoms Raynauds , joint pain etc.. they didn’t know what to do and just put it down to menopause!

In the end I was so desperate I went private to a rheumatologist and within a day after he requested my blood test results and history from my GP I was diagnosed with Lupus and put on medication !

You need to see a specialist which is a rheumatologist! ask your GP to refer you to one! good luck

[fgade]

Thank you. Yes I am starting to research on seeing a rheumatologist privately. I worry about how much it would costs to see one privately here in the U.K. I have an appointment with GP tomorrow. I hope she sees my point and refers me

Thanks for coming back

[Nat61]

I would see a rheumatologist for further testing. Raynauds and Lupus can go hand in hand. Exhaustion and aches is how my lupus started. I had Raynauds symptoms before my lupus.

[KayHimm]

Fgade - it sounds frustrating that your doctor didn’t explain his reasoning to you. You are owed an answer.

ANA is positive in 18.3 percent of patients with vitiligo. It could be that your specific auto-antibodies that would point to systemic autoimmune disease were all negative. He can could explain the meaning of that.

If the ANA is positive, the other tests are automatically run in the lab. It is called reflexing. You could ask your doctor to make sure.

You are still feeling unwell and need an explanation. Your doctor may plan on following you, watching if other symptoms develop. That is not uncommon and happened with many of us. So you should report any new symptoms to your doctor.

Hope you get some answers.

K

[bookish]

Hi. Might be worth asking around in the family to find out what other autoimmune history you've got. Vitiligo is believed to have some of the same genetic variants as Pernicious Anaemia, thyroiditis and Coeliac so you may find any or all of those. Some say Vitiligo and Reynaud's aren't autoimmune, others differ. I have both, too, plus other AIs and have PA and thyroiditis (Hashis and Graves) in the family, although mine are 'fine'. Neurologist said my vitiligo is due to family history of PA. I found I do need more B12 and folate and changing to gluten free, dairy free, nightshade free etc has slowed the vitiligo right down. If possible, get copies of your blood tests so you can check where you are with everything. Please don't just start a B12 supplement - you need to be tested first, properly, for PA (which is unfortunately rather hit and miss anyway) and supplementing will skew the results. Best wishes

[Muff20]

Go and see a different Gp. They are all different. I found the leaflets from lupus UK very good. Take the information with you. Say you have this advice. Good luck. Having a good supportive GP makes all the difference.