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Discussion Starter #1
Hi there,

Just a quick question...I've got my initial appt through for St Thomas' but I did ask to be refered to Dr D Cruz but have an appt with Dr M Cuadrado. I looked on the St Thomas' website & there was info about all the other doctors apart from this lady & another Dr.

Has anyone been to see her & what were your thoughts?

I was desperate to get this appt & a diagnosis but now I've got it I'm really scared & don't know why...:worried:

Fran
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Don't be scared - I'm sure they all work together as a team, hopefully!

I see a Dr Karim (Immunologist) at Frimley Park Hospital/Surrey - he also covers Royal Surrey Guildford and still does cinincs at St Thoms!

Love Lesley
 

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Hi Fran,

Dr Cuadrado is my rheumatologist at St.Thomas' Lupus unit and I think she's really good. I hope you think so too.

Don't be scared: the first step to start feeling better is to get a diagnosis and take the proper medication. Good luck!!!!!
 

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Discussion Starter #4
I called them to see why I hadn't been referred to Dr D Cruz as my GP said he would request & they weren't sure but have changed to to Dr D Cruz for only a week later so feel a lot happier now.

Thanks for all your replies & private messages.

Fran
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Discussion Starter #6
Hi there Alex,

No I don't as it was a referral from my GP.
Think you can go privately if you want to but not sure how you would go about it - maybe post a thread?

Fran
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hi thanks for the info how long did u have to wait
i live in belfast and i am getting no where here with consultants
so have been looking further afield for help was considering seeing one of the consultants there
 

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Alex, she isn't on here but if you leave me to email her,I will certainly ask if she would talk to you.
x Lola

Get back to you as soon as I can.
 

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Discussion Starter #12
Hi Alex,

I've had to wait 6 weeks thats all so thats really good.
Hope you managed to get some info from Lolas contact.

Fran
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Dr cuadrado is mine as well and after my last appointment i have great confidence in her, my initial appointment was very quick, but she is in great demand my second app. was 11 months (her next available), and this times it is 13 months gap(still her next available appointment), so don't be too surprised if you don't see her too often.

Her secretary is very helpful if you need to get a message to her etc
I still see my GP for most things but they can fax if you need to see them urgently.
 

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Discussion Starter #15
Hi there,

Over the past week I have had a letter cancelling my appt with Dr D'Cruz & giving me another appt with Dr Cuadrado. I called to ask why it had been changed & the appt with Dr D'Cruz was a drug clinic one apparently, not an initial appt.

So I then asked for it to be changed to Dr D'Cruz & was told the next available one was sometime in 2009 as my GP hadn't specified any Drs name on the referral & if it was specific for Dr D'Cruz it may be earlier.

So I called the secretary at my GPs & she said she would sort another referal letter out & get me an appt with Dr D'Cruz. That was Monday & not heard anything as yet & am back to square 1 with no appt.

Still very reluctant to see Dr Cuadrado as I've been told by a couple of people that if the bloods don't show as positive then thats the end of the line with her & she won't diagnose on symptoms only.

Has anyone been to see her & been diagnosed on symptoms only when their blood has come back ok?

I'm so fed up again. Last week & the week before I felt so much better & then out comes the sun & I feel awful again.

Fran
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Dear Fran,
Is there any way you could see Dr. D'C privately. He is worth it and if money is a problem (let's face it we all know that one) he is very fair. He will not do unnecessary things and bump the bill up. Just explain.

Personally, I have to say Dr. D'C is my choice both for myself and my Daughter.
He has a lovely manner with everyone. My Daughter is only 17 and had been brushed off by a lot of Docs. despite being very ill. She is a firm fan of Dr. D'c.!

I am so sorry you have had this let down!
x Lola
 

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Is it possible to see Dr D'C privately, but then getting referred back into the public health system for any tests that are needed ?

That's what I do where I live (down under), my favourite neuro no longer works in the public health system, so I pay to see her but she refers me to the public system for tests I need so they are free (nerve conduction studies, eegs, etc). Same doctors do the testing, I just don't have to pay the hefty fee for the tests.

Not sure how the NHS system works and if this would be possible - but where I live blood tests are free whatever doctor orders them (private of public) so I just have to swallow the consult fee and get everything else free.

hope it all works out - otherwise you could always just see the other doctor and see how it goes, and if it doesn't work out then go on to see the doctor you do want to see privately.

Also, don't get too hooked on one diagnosis, you want a doctor to work out what is wrong with you rather than just rubber stamp any self diagnosing that you may have done.

good luck with it all

raglet
 

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Hello Fran
You have a big advantage over many other people seeking diagnosis in that you already have a well established discoid diagnosis.
Having a formal SLE diagnosis is not an end in itself. It is important to have a thorough lupus work up and a urine test to get a better overall idea what is going on. There might be things like a low white blood cell count or anemia that could point to more systemic disease without there necessarily being enough criteria for a formal SLE diagnosis.

There is not always a hard and fast dividing line between skin lupus and systemic involvement.
It could be important to rule out other causes of systemic symptoms to find out which are lupus related.
The aim is to establish what symptoms are being caused by your lupus and to treat them effectively It could well be that effective treatment of the skin problems will bring relief for other symptoms as happened to me

I have never heard a bad word about Dr D Cruz and as a very experienced patient I rank him at the top in all respects.
I'd call The London Lupus Centre to find out what the cost of going privately is and how long you can expect to wait either to see Dr D Cruz or any of the other consultants. As far as I know there is no reason why you shouldn't pursue the NHS route at the same time. I can't recommend stealing but begging and borrowing might help with funding or if you have a birthday coming up. Even an advance on Christmas

You might find yourself doing a rather tricky balancing act between the two at one stage,
Get your GP to do all the tests he can unless you had them done within 6-8 weeks of an appointment.
I do think it is important to get validation soon and start on some treatment.

I know you had a poor experience with anti malarials before. Are you sure you started on Mepacrine first before Plaquenil ? That is most unusual.

Perhaps you could arrange a forward treatment plan with the doc you see privately. Try the anti malarial again doing all you can to minimise side effects such as starting very slowly and working up to maximum dose.
If you can't tolerate it or if it is not enough, start on another drug or add another. Clearly this would involve the cooperation of your GP.

The sun avoidance is a major problem. Plaquenil gives some small protection but not enough to make sun exposure possible, it's just another small help along with all other measures.

I hope you can get it all together soon

All the best and the best of luck
Clare
 

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Discussion Starter #19
Hi there,

More changes now - the referral letter came through from my GP for me to see Dr D'Cruz so I called using the new appt system we have here & got an appt for Sept 18th, the next available one - 3 months I suupose isn't too bad but it does mean that I've got to do the summer without any real direction or medication to support me. I will call again to see if I can get a sooner private appt but it depends how much it is.

Claire - I definately started on Mepacrine first before Plaquenil & it really upset my tummy, as far as I remember anyway. I'm still on Plaquenil which does the trick most of the time with my rash but it does now flare up quite badly every couple of months. I tried to get a private appt with Dr D'Cruz but couldn't get through. My own Dr won't do anything (i.e. change medication or test for other things) until I have been down the Lupus route & its been agreed that its not that. Only then will he look into other causes which is a pain cos I just want to find out what it is so I can do something about it to make myself feel better.

Had the day off sick today, woke up exhasusted so called in with a tummy bug...couldn't call & say sorry I couldn't come in I'm really tired. Also told partner it was a tummy bug as he seems to not understand how I feel as I've said before. I feel like I've lied to him but it just seemed easier - feel bad tho. Dreading going back tomorrow as its meant to be sunny again & the van just does me in by the end of the day. Think I'm the only person in Kent thats pleased when it rains!!

Fran
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Dear Fran, I am glad the appointment is sooner, and well done for being firm with them!

I have just bought a window spray which was mentioned on the main site here. There is a sun sensitive group called Eclipse which gives further info. accessed from the main site. Obviously I haven't tried the window spray yet but it is supposed to block nearly all the UV and of course does not affect the vehicle in any way. It goes on like a glass cleaner. I will let you know as soon as I have applied it. It may help you. It was just over £17 and should last well.
x Lola
 
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