Information about newly diagnosed tests

[Tulipano]

Saw my consultant today. I am newly diagnosed and my esr was highly raised and my ana was negative. She does think I have lupus because of my symptoms and esr level. But before starting heavy medication she wants to do more further tests i.e an abdomen ct scan to check my heart and kidneys. I have a fast heart rate and slightly high blood pressure. I also have blood in my urine and if the ct scan doesn't show much she wants to do a kidney biopsy. I am so scared and confused. What do you think the ct scan will show? I also have an inflammation around the optic nerve. Any advice or same experience? Xx

[Leave-me-alone]

I had similar experience. Blood reading was like yours. Few months on I now confirm SLE and lupus antocagilant. Last blood test show that I still have lupus activities.

[Wendy39]

Hello

I just wanted to say that the diagnosis process can be very scary. It feels like an awful roller coaster ride, that you just want to get off! All of this is perfectly normal with a diagnosis pending on a life changing/life limiting illness. But we have all been there. Those early days are very hard.

It sounds like you have an understanding rheumy, as although your current ANA test was negative, she thinks your symptoms add up. That's good. The average lupus diagnosis takes 7.5 years and some people here have been a lot lot longer. But you are on the right track. Your Rheumy should be sending you for lots of tests and xrays etc. They keep these as a base line and then can compare the future tests etc. I had chest xrays, xrays of my hands and feet, ECG, lung function tests etc. And always lots of bloods to rule out other issues, like diabetes, thyroid problems, aneamia or B12 deficiency, gluten intolerance etc.

I am not an expert in any of this and I'm not medically trained, I can only speak from my personal experience of lupus, (diagnosed October 2013). How high was your ESR? And have you suffered high blood pressure before? Do you think you have signs if kidney involvement? I haven't, but I know there are others here with kidney issues. So hopefully some of those people will reply and try to reassure you. We can't guess at what your kidney CT scan will show either. What medicaiton has she mentioned to you? Have you started hydroxychloroquine, which appears to be the first building block with most of us with lupus?

Keep a good relationship with your rheumy and your GP. Keep a health diary of how you are feeling each day and any new symtpoms. Look at the Lupus UK website - they ahve great information, including a leaflet on Lupus and the kidneys. Arm yourself with knowledge about all aspects of your illness and then you will be able to deal with the tests and be reassured by what your doctors are doing for you.

Most of all, be patient with yourself. I am not sure you ever really completely accept your diagnosis and how it changes your life, but it does get better. Get loads of rest and take care of yourself. Drink lots of water. Eat well. I hope you have the support of udnerstanding family and friends because that will help you too.

And keep posting here. there are lots of kind, knowledgeable people who want to help as much as possible.

Not much help I know, at such a confusing and upsetting time. But you aren't alone.

Best wishes

Wendy

[Paul_Howard Partner LUPUS UK]

Hi Tulipano ,

I hope that the scan(s) go well and help towards getting a diagnosis for your symptoms. Try to take one step at a time at the moment. It sounds as though your consultant is being very thorough and is taking good care of you.

[Tulipano]

Thank you everyone xx I am just very tired of tests but I agree my consultant is doing a good job. Xx