lengthy struggle to get a diagnosis.

[lovesmoo91]

Hi I'm Rachael, 26 from Gloucestershire. I'm currently in the lengthy process of trying to get a definitive diagnosis for Lupus. I've been suffering with symptoms for the past 6 years ranging from extreme fatigue, pains in my lower back, abdomen and many joints, hemiplegic migraines, skin rashes, reactive lymph nodes in neck, severe eye problems, nose sores and much more. In total i have a good 8 out of the 11 lupus criteria guideline. Over the years I've had positive DS-DNA, Positive ANA, low white blood counts and now high liver alt results, finally got given a referral for rheumatologist however I've only just seen a rheumy consultant last week because i decided to pay privately. The soonest app on nhs as 'urgent' is Feb. 5th 2019! My consultant has requested i have some other blood tests done now to see whether he can tie in all my symptoms and previous blood results to lupus. these include C3 and C4 compliment, cardiolipin antibodies and ESR. I'm really in need of guidance from people who have possible been in the same situation with struggling to get a diagnosis? Any kind of advice would be much appreciated at this point.

[lovesmoo91]

I did take with me all the above to my appointment, however I just got the feeling that he was still not convinced fully that it could be lupus. He sort of tried justifying some of my blood work and throwing off some of my symptoms. He basically said the only three markers he felt were lupus related were the facial rash, lymph nodes and migraines? After looking on lupus uk lots recently I felt very confused by that as a lot of my other symptoms are linked with lupus? Just feel very much confused and knocked back by the whole process. I've got my blood tests booked tomorrow am so I'm praying for some answers with those. Thank you for your comment. Rachael xx

[lovesmoo91]

He seemed to have a lot of things he treats and lupus was one so that's why I booked with him. The others local ish to me didn't really cover lupus. Fingers crossed something will be shown in these new tests that could give me some answers.Thank you for the advice it's much appreciated! Xx

[honeybug]

Sorry for the battle to get diagnosed. Hoping it will happen soon. Best wishes.

😊🌸🌿🦋🤗💗😘

[whisperit]

Hello Rachael

It can be a real struggle to get a useful diagnosis, but please don't forget that it need not be labelled 'lupus'/SLE to still be 1) a real problem 2) treatable. Many people here have very similar collections of symptoms but might have a diagnosis of Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, Sjogren's Syndrome and so on. Despite the variety of labels, the treatment is often very similar (for example, hydroxychloroquine plus steroids) . The important thing is that there is a good understanding of what kind of problem you have and how effectively to monitor and treat it.

It sounds like you are seeing this consultant privately in lieu of a NHS appointment? Are you scheduled to see him again following the blood results? If so, then that should be a good opportunity to go over all your questions prior to his writing a report for you and your GP. This should include his findings and recommendations for treatment, so do make sure you are clear about what he intends to write and ask for his thoughts on what you should aim to do next. Since the waiting time till your NHS appointment is so long, maybe focusing on what he thinks you should do in the meantime would be useful? eg can he recommend to your GP that treatment begins immediately or at least that the appointment is expedited? Can he write direct to the NHS rheumatologist himself?

Hope the blood results are helpful, and please do keep in touch x

[lovesmoo91 in reply to whisperit]

Hi Whisperit,

Thank your u for your message. I totally agree with you, any explaination for why I'm feeling this way would be great. So I'm booking back in to see the private consultant once my bloods are back which should be about 10 days. I will do what you suggested and write down all my questions so I don't miss anything as the appointment time does fly by. He's written to my gp following the first app so I'm quiet confident that he will write again for the NHS consultants to see to summarise after these bloods.

Will keep in touch x

[Chanpreet_Walia LUPUS UK]

Hi Lovesmoo91,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

The symptoms you have mentioned, extreme fatigue, aches/pains, skin involvement and nasal ulcers, do resemble symptoms related to lupus. We published a simple yet informative blog article on getting a diagnosis of lupus, if you haven’t yet read it you can read it here lupusuk.org.uk/getting-diag... - The article has a section discussing ‘what to do next?’ for those newly diagnosed.

If waiting for an appointment that is quite some time away, you can try ringing the rheumatologist’s sectary for any cancellations that you may be able to fill. Before attending your next appointment, you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

[lovesmoo91 in reply to Chanpreet_Walia]

Hi Chanpreet_Walia,

Thanks for all the information I will look through that now.

i have notified them that i would be more than willing to accept a cancellation and also my gp is going to press them on his end so hopefully I will get a sooner app than what I have now. If my private consultant makes a diagnosis of some sort following the bloods I've just had done it may not matter to much waiting though so fingers crossed I can get somewhere with my private consultant 🤞