[madwife]

Hi to everyone,

Im a 38yr old mother of three. Im also a community midwife.

I have suffered from migraines and a sun allergy for years. Since October last year Ive had a rash on my face, neck, chest and nasal sores - which just wont clear up no matter what lotions or potions I try! I also have Raynauds, joint pain and for the last 8 wks Ive been constantly tired - I have been known to sleep all day, get up at 7pm, have a shower then go straight back to bed and sleep all night too, which is completely out of character - I should have been an owl!

I finally went to my G.P. who talked to me about lupus. My FBC shows raised ESR and low Lymphocyte count and Im still awaiting my ANA result.

Im thinking that its probably worth getting a referal to St Thomas's even if my ANA comes back negative. What are your views? Do you think its worth getting my G.P. to refer me to Dr D'Cruz?

Midwife x

 

[Maia]

Welcome to the site and yes - I think it's worth a referral to Dr. DCruz *especially* if your ANA comes back negative. Has the rash been investigated by a dermatologist? Be sure to take pictures of your rashes for your upcoming rheumatologist appointment as they do tend to have a knack of disappearing just in time for an appointment.

Many people here who have had a difficult time getting a diagnosis find diagnosis happens when they get a skin biopsy from a dermatologist. With any luck - you'll get in quickly to a rheumatologist and a diagnosis of some sort (lupus, UCTD) will be obvious with bloodwork combined with your symptoms though... & treatment can get started quickly.

Best wishes to you!

 

[LolaLola]

Dr.D'Cruz is wonderful and if a referral is on offer you would do well to take it.
He has treated me for quite a few years and my Daughter also.
Best of Luck and welcome here.
x Lola

 

[Clare.T]

Welcome to the forum
Many cases of lupus are quickly diagnosed and easily managed locally. If the ANA is high enough to strongly confirm the lupus likelihood you may well be able to get perfectly adequate care locally. This has many advantages.
While St Thomas is the tops, they are very pressured and communication with them can be very difficult outside regular consultations which might be few and far between. Just getting there can be very time consuming even when you live reasonably close.
I would wait and see what the ANA is. Meanwhile check out the criteria lists and see what you can relate to. Make sure urine has been tested too. Also thyroid and anemia
It is often hard to get a referral out of the local HCT area.

If the ANA is negative or unimpressive, dermatology can be the answer.

Best of Luck
Clare

Keep in touch and let us know how you get on

 

[madwife]

Many thanks for your replies. Ive now taken pictures of my rash - I'd never thought of doing that before now. I can relate to much of the criteria list. My urine wasnt tested. My Thyroid and HB (11.1) were OK, although I have suffered from severe anemia (7.1 - 8 mmols) in all 3 of my pregnancies.

I havent seen a dermatologist yet. Ive had the sun allergy for years and have just learned to live with it. The rash Ive had for about 8 months and have tried to get rid of it by myself without seeking any kind of professional help i.e. changing diet and different remedies etc.

Im covered by Bupa insurance who will fund a visit and diagnostic testing with Dr D'Cruz, although they wont cover me for follow up visits if its discoved that I have Lupus. Im more than happy to receive care locally - I just thought it might be worth getting reviewed by Dr D'Cruz first.

Midwife x

 

[louise67]

hi and welcome, i too am new to the site. i have just finished a large dose of steroids, and whilst i was on it my rash cleared completley. i am now waiting for it to come back, so that i can take a photo. i never thought of doing that before and think its a great idea, so now instead of wishing it would go, and trying all the creams, i am wishing it would come back so that i can get a good picture. :hehe:
good luck with evrything, take care
louise x

 

[cmfinnis]

Hi midwife,

just wanted to say Hi as I live in Kent too!!
I think you've already received good advice and ultimately it's up to you where you go for treatment. I don't know whereabouts in kent you are but I do see a local rheumatologist and she's extremely good. As Clare said, I do get seen periodically by Tommies but they're really over subscribed and getting through to them is impossible, even in an emergency!

My loca rheumy can see me much more regularly and I can go to her with any worries I have at first. I have found this to be a great advantage.

A lot of what you describe are lupus signs and symptoms as I'm sure you're aware but the diagnosis is often made by the consultant taking the history, examination and finally the bloods into consideration. this is because lupus is a 'clinical diganosis'.

I wish you well, and let us know how you get on!

Cathy x

 

[madwife]

Thankyou for all your replies.

My G.P. phoned me today and said that my ANA was positive and that he would like to refer me to a rheumatologist. I told him that my health insurance would cover the visit & that I was considering seeing Dr D'Cruz at St Thomas's, so could he make the referral - which he was more than happy to do.

Dr D'Cruz hasnt got any appointments until the end of July, so Im going to see Dr Tench on tuesday instead. Once I get some sort of diagnosis, I will start looking for a good local NHS rheumatologist.

Midwife x