Newbie here

[Greengreengrass1]

Hi I'm new to the forum and for a while now I suspect I have had lupus but tbh I thought it was peri-menopause, joint stiffness, massive hair loss and thinning, blotchy skin, tinnitus, low mood. Thing is the HRT has done nothing to help any of these symptoms and I'm really struggling with chronic stiffness in my lower back and I've had a rash on my face appear in the last 4 months that hasn't gone away. I also suffer from a very itchy scalp. I don't get the migraines that are reported but as you can see a whole host of other things. I was referred to rhuematologist in Nov 22 and he basically said I can't see a problem here, you have some stiffness but your markers aren't showing anything. Should I ask my GP to be referred to a dermatologist? I'm based in SW London are there any specialist clinics that folks could recommend? NHS or private I really don't mind I'd just like some answers.

Thanks for reading

Ruth

[Maycontainnuts]

welcome hug to you Ruth, you’ll find a lot of good advice, empathy and support here. As you are in London perhaps the London Lupus Centre might be the place for you. I have no direct experience of it as but have seen people on this forum speak very highly of it as a centre of excellence. Hope you find the answers you seek. All the very best x

[Greengreengrass1 in reply to Maycontainnuts]

Thankyou so much, will take and look.x

[Graystar]

I’ve heard good things about the Lupus centre in London too. Everyone has different symptoms with Lupus so no two suffers are alike. I hope you get some answers soon, it’s so difficult getting diagnosed. Keep a diary of your symptoms as Lupus changes on an individual basis. So you may not have certain symptoms currently but suffer with them in months or years further down the line. Also provides you with evidence for any future appointments. Just remember to condense the information and provide in bullet points and keep to one side of an A4 page or the practitioner will struggle to wade through to much information. Most professionals are grateful for the information provided in that way.

[StriatedCaracara]

I drew a gingerbread person outline and annotated it with symptoms.

If you date the drawing, you can make other snapshot pictures as symptoms change.

I now keep a stencil I draw around.

If you take a photo this can be emailed in.

Ask that colour be retained if converted to pdf.