10 Drs before a referral

I think I've probably had Lupus for at least 3 years, the final straw was a huge left sided swelling to which they referred me to a hand specialist who promptly told me it was because I was fat and needed physio ! I went back to see various GPS who all told me the same, one day I was in tears with my hands and I got a locum who went mad and said I needed to see a rheumatologist who promptly diagnosed Lupus. I'm curious as to why he kept looking at my feet and legs though??

[Barnclown]

Hello Kate 👋👋👋👋

Thanks for making me laugh this morning: it was your last sentence that hit the spot 😂😂😂😂 because at my appt with the first rheumatologist I encountered over 5 years ago the consultant spent ages looking at my hands which made me vvvv curious too! He didn't say a thing...I assumed he was looking at my raynauds colouring (it was Feb...my hands were purplish) but now I know there was much more than 'just' raynauds to see...and my understanding is that the visual appearance of my legs & feet is just as significant: livedo reticularis, tendon tightening, ligamentous laxity, appearance of veins, petechiae, paroxysmal haematomas, nailbeds etc etc etc...I could go on & on...

Am looking forward to learning how you get on

🍀🍀🍀🍀 coco

[Hidden in reply to Barnclown]

He he I know!!! Never had anyone that interested in my feet before!!!

[Hidden]

This would probably be that they were looking for signs of RA - which is far more common than Lupus. RA most often starts bilaterally in the small joints of the feet and hands - particularly the knuckles and metacarpals (base of toes) and most rheumatologists find RA the easiest of the rheumatic diseases to diagnose for this reason. It also requires early detection and swift treatment because the erosive damage can happen in the first three months and is more or less irreversible.

Lousy doctors for dismissing you X 10 but not surprised - so many of us suffer this sort of thing. 🙄😱😁

[Hidden in reply to Hidden]

Thank you for your reply, he said it wasn't RA straight away as I had a lot of the symptoms of lupus more so than RA, it just made me chuckle how he was so interested in my feet!!!!

[Hidden in reply to Hidden]

Well maybe he's a fetishist for feet and yours were particularly alluring?!!!

Joking aside feet can be very badly affected by RA and also by Lupus - and of course there is often overlap between the two diseases as well as the other connective tissue diseases.

[Hidden]

Ps you should be really glad he studied your feet though. I know loads of people with RA who have rheumies who won't go near their feet because foot problems are so common that they are excluded from the RA disease activity score (DAS28)! How daft is this??!

[Barnclown in reply to Hidden]

and the same is often true of vasculitis, sjogrens feet & legs etc....whereas diabetic feet are taken more seriously...GRRRRRR

[Hidden in reply to Barnclown]

Well to be fair my rheumy always used to examine my feet. But after five years on the NRAS HU I learned how unusual this was. The neuro took one look at mine in May and requested a diabetes test - which was fine as always so far. And yet the private endo I saw said that neuropathy like mine would only be found in advanced diabetes. I'm increasingly frothy about the general ignorance we all seem to be met with over all these rheumatic diseases!! X

[Barnclown in reply to Hidden]

Again, we could be sisters...there is enough overlap 😉 Yes: my medics are always saying similar stuff about my feet...I think you know they've been a lifelong issue & had a lot of investigations, treatment etc over the decades due to EDS + infant onset SLE combo...🍀😘