Appointment

[Suecon]

I had my follow up rheumy app yday and all my blood tests are apparently perfect. She stated categorically that I do not have lupus but had no explanation for my plethora of lupus symptoms, including a butterfly rash. I'm feel lost and frustrated now tbh

[Georgie-girl]

Don't fret Suecon, we've all been there. Some of us still are as it's not always easy to get explanations for our symptoms. It seems some Rheumatologists diagnose by symptoms and history more than bloods and some absolutely deny you can have an autoimmune disorder with normal bloods. Sadly, it really does often depend on the hospital or Doctor you go to. Shame but true.

I may be wrong but I'd have thought with the butterfly rash she might at least have been a bit more open minded.

I don't know if you have another appointment with her or not but if not, perhaps you could ask your GP to refer you somewhere else? Administrator will happily give you some details of specialist clinics.

In the meantime, don't feel lost, we are all in the same boat and all here to help each other when needed.

[Suecon in reply to Georgie-girl]

Thank u for replying. I din't have another app and will just see how I go. This happened with my hashimotos and pernicious anaemia too so I shudn't be too surprised lol. She did recommend that I see a dermatologist for my many skin problems and conceded that I cud have cutaneous lupus. Which, she said is not actually lupus. If I get worse I will see about getting some referrals. Thank u again xx

[Georgie-girl in reply to Suecon]

No problem. Please keep us posted X

[Shaysuekirk]

Did you have a positive ANA? My Rheumy doesn't like to categorize/label autoimmune disorders since they all overlap (mine is most likely lupus), but they are all pretty much treated the same way - w Plaquenil. So, you don't *need* a label as long as you are treated. Did she offer any help for your symptoms?

[Suecon in reply to Shaysuekirk]

No ana and no help. Dufferent reasons for most if my symtoms and completely ignored things like butterfly rash and hallucinations. A pretty frustrating app, and a waste of half a day 😏

[Hidden]

Hi there,

I am sorry to hear that you are getting confusing results and information regarding your symptoms.

As some people have already suggested you might want to get a second opinion and ask your GP to refer you again. We can provide you with details of lupus specialists in your area and you can contact me at [e-mail] if this would be helpful to you

.

[Suecon in reply to Hidden]

Thank u, Fabiennd. I have emailed u x