LUPUS UK
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not diagnosed

Hi everyone,

Initially, I went to the doctor because i felt a swollen lymph node in my neck and he referred me to a surgeon who said it was fine and not clinically significant. I was tired a lot but didnt think much of it. My symptoms later appeared. I had more swollen glands in my body but are very small. My symptoms are sometimes present and sometimes they arent. The symptoms that i generally have is fatigue, I have a rash on my neck ( but the doc said it could be fungus and prescribed meds), chest pain, shortness of breath, headaches, dizzeness, stabbing pain underneath rib-cage, I had difficulty swallowing once , hairloss(not a significant amount) and the rash on my face also known as the butterfly rash ( its sometimes there and sometimes it isnt; if im out in the sun it would appear but my doc says if i had it, it would remain and not disappear and reappear like that). I also lost some weight; i was 101 and now im 95. My labs cbc is normal, cmp/pn-liver ( the bili was elevated slightly and my alpi was low), esr was normal and ana postive 1:40 titer speckled. My doctor said im fine because my esr is normal and its too early to tell. he did refer me to a rheumatologist ( which is a plane ticket away) to get a specialist opinion. My question is if you have a normal esr does that mean you dont have lupus, even with the symptoms? And finally does the butterfly rash stay on your face? Thank You!!!

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I had many similar symptoms as you described and was diagnosed as dermatomysitis. It is a rare autoimmun disease. For more info, please check the The Myositis Association wh site.

Wish it is not but worth to check

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Have you had the more specific tests for Lupus and other autoimmune conditions? I had similar symptoms to you - a lot of the sub-clinical symptoms of impending autoimmune problems 2-3 years ago (raised lymph nodes, problem with sub and heat, fatigue, palpitations, reflux, rather pink cheeks for me though not clear cut...some of these longer in duration of 10 years). I was told it wasn't clinically significant. ESR normal.

Then I got the joint and muscle pain in Feb. Finally tested for Lupus, and got diagnosed. By then my ESR was raised. It is now normal again, though my antibodies aren't. Don't forget that a formal diagnosis of Lupus needs blood tests and typical symptoms and/or a plethora of symptoms. Though that doesn't mean to say you aren't on your way there...

It would probably be difficult to get the docs to give you meds as a preventative measure (but good you've been referred to a specialist, so do go, and they might). But had I known what my symptoms would lead to, I would have made extensive lifestyle adjustments sooner.

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My butterfly rash comes and goes. It isn't permanent. I always wear spf 50. Take a selfie when you have the rash, to show the rheumy. My rheumy was grateful for the selfie because, of course, it's never there on the day.

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Thanks!!! That's a great idea. I'll keep that in mind before I go to the rheumy.

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Thanks for your help!! I think it's very hard to diagnose and no I didn't have any specific tests done as yet.

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Hi Sana78,

Welcome to the LUPUS UK HealthUnlocked Community!

We are not medically trained here therefore we cannot comment on your test results.

An ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. Further testing would be required to accurately identify the cause of your symptoms. To find out how lupus is diagnosed, you can download our free information pack here: lupusuk.org.uk/request-info...

According to The Lupus Encyclopaedia, the rash of acute cutaneous lupus which includes the ‘malar rash’ can “last a few hours, a few weeks or sometimes longer”.

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

The Lupus Encyclopedia states that “Most people who have active SLE have an elevated ESR; however, many do not. Some SLE patients who have no active disease can also have an elevated ESR for no apparent reason”. ESR varies and can be due to reasons other than inflammation like age, being female and anaemia. An ESR test is not sufficient alone, it needs to be performed along with other tests. There is no real correlation between ESR levels and lupus.

Please keep us updated, wishing you all the best.

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Thanks for the information, it's very helpful!!

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