[julsie]

Hi all,
Just to let you know,I went to St.thomas's the other day.The consultant said my bloods were negative and that she didn't think the rheumatoid factor was relevant.She said that there were no blood results to support Lupus but did not rule out subacute cutaneous lupus.She was not impressed that my doctor wouldn't refer me to a dermatologist,especially as that may be my only way of finding out what's going on, and would try to sort it out at that end.So that's it,more waiting to try and get a dermy referral.Thanks for all your support,
julsie

 

[JudifJ]

:hug: Hi Julsie

I'm glad the rheumy is taking your dermy symptoms seriously enough to make a referral. Let's hope you get an appointment soon. As we know blood results aren't everything so another opinion (dermy) will hopefully get you closer to a diagnosis.

Hope the wait isn't too long.

Love Judi xx

 

[Lily]

Hi julsie,

I'm glad the appt seemed to go ok. Even with SCLE you can have symptoms that are very similar to SLE ones. There seem to be different levels of SCLE involvement. Some people suffer quite badly with it with a lot of involvement of joints, pleuritis etc. It's good that she is going to try and sort it out for you...........I don't blame her for not being impressed with the GP, he sounds like a real drongo :wink2:

Good luck and as frustrating as it is, it sounds like at least she is on your side, thats a good start.

love
Lily

 

[Clare.T]

Hi Julsie
I am so glad she is arranging skin investigation. I seem to recall you looked at the SCLE rashes already ? You could write asking if a couple of biopsies could be done one on unaffected skin and one on lesions ?

( Note: SCLE refers to a particular sort of lupus skin. For some people only the skin is affected, others have various lupus symptom in differing degrees of severity. This is opposed to the discoid type where the majority have no other lupus symptoms.)

All the best Julsie

Clare

 

[julsie]

thanks,Judy,Lily and Clare.
Clare,I took the photos in the St.Thomas's newsletter,I think they're of someone we know! 8) he!he! and wiggled them under the doc's nose and compared it to the photo of my skin.I was pretty desperate to get my point across,I think it worked!
Julsie

 

[halfpintfl]

Hi Julsie, this is just a thought, but as your consultant has many other patient's in her workload, can't you call up your GP and say something like:" This is really important that these problems get dx and straightened out. Could the dr. please give me a referral to be seen by a Dermy, I am just getting no where fast." Would that work? I hope so, best of luck.