Ana positive but not clear about the diagnosis - LUPUS UK

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Ana positive but not clear about the diagnosis

Kfrankie profile image
4 Replies

Hello first time to post. I went to the rheumatologist yesterday for the second visit.

And I forgot to mention I get these clear blister type bumps on my fingers and hands, they itch! My Ana 640 speckled and positive. They ran some other test too, AnTi Scl 4.0

But I left office uncertain what exactly they maybe saying I have. They did prescribe naproxen and plaquenil ( hydroxychloroquine). I've been having joint pain and other issues that's what originally sent me to rheumatologist.

Confused and uncertain....kfrankie

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Kfrankie
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4 Replies
Rubylu profile image
Rubylu

Hi Kfrankie, I would suggest you contact the consultant's secretary and explain your confusion, and request a letter to clarify any diagnosis if one has been reached yet. In my experience they are normally very helpful if you do this. If you are in the UK and an NHS patient, you should be given a clear explanation of your condition, even if that means it's not possible to clearly label it yet, and an agreed (with you) plan of care. So if treatment is or is not recommended, you are entitled to a rationale for that decision. If things are not as clear as you thought they were during the consultation, you should seek clarity by contacting your team. Don't be afraid to do this.

Good luck and I hope it all becomes more clear.

Or, if the department has a helpline like a rheumatology nurse helpline, then speak to the specialist nurse, who will be able to find out and explain things again to you.

It's interesting to see your results, but I doubt anyone on this page would want to suggest what your diagnosis might be.

whisperit profile image
whisperit

Welcome, Kfrankie,

To echo what RubyTuesday2 says, it's also likely that the rheumatologist will have written to your family doctor to explain the outcome of your consultation. S/he ought to be willing to share that with you.

Mind you, I think many people here would say the confusion over the proper diagnosis is not just among us patients - these auto-immune disorders are so complex and present with so many weird and wonderful symptoms that even specialists are often left vague about what diagnostic label to use.

Keep in touch x

Dalollies profile image
Dalollies

I also had a ana 1.80 position e and speckled. I get blisters on my right hand as well the dermatologist told me it was exema. I have had blood test that have came back normal. About 5 pm I feel cold and fluish. My doctor can't diagnose anything with out positive blood tests. Good luck...

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Kfrankie,

Welcome to the LUPUS UK HealthUnlocked Community!

Using an online sociable forum such as this one gives you the opportunity to connect with other people who have lupus and can help relieve the worries you may have by hearing other peoples’ experiences. We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

It is advised you discuss your symptoms with your rheumatologist at your next appointment so that he/she can provide you with the correct treatment. We published a blog article on pain management containing helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

As other members of the community have mentioned, you should hopefully get copied into a letter to your GP from your consultant which should outline the diagnosis and treatment plan that has been discussed with you. If for any reason you don’t receive this, it may be worth making an appointment with your GP or if you have the contact details for a rheumatology nurse at the clinic, maybe give them a call. If you need any tips on preparing for future appointments, we have a blog article that you may find helpful - lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

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