[Ocean1]

Yay, so ive got my appointment through with Dr D'Cruz at the end of the month! (never thought id actually be happy to go to a hospital! :blush: but atleast i'll hopefuly no whether to rule lupus in or out after ive been!)

Its going to be pretty stressful getting up to the appointment though as ive got to fly and catch 2 trains! but i have hired a wheelchair for the visit and am staying in a nice hotel for the night, so hopefully wont tire me out too much!

So do you guys recommened taking a list of my symptoms etc, how i first became ill and family history? I dont wanna take too much info and him think im a loony and obsessed, :blush: as my symptom list is very long! but I kinda wanna make this visit to see him worth it as its costing me alot of money and effort! so dont want it to be a waste of time! :blush:

I know some of you guys have seen Dr D'Cruz as he came highly recommended, any comments on what hes like etc would be great

Thanks, hope your all doing well
bex x x x

 

[Lily]

Hi Bex,

That's great news, not so long to wait now :thumbs:

I would definitely try and summarise that list of symptoms, putting the most important ones first, the ones that you feel are definitely connected to Lupus or a Lupus like disease, have two copies handing one over to him. Your family history is also very important if it holds relevant autoimmune conditions. A list of your current medications and any supplements you take too.

It sounds like quite the journey you have to undertake but I wish you well and I have everything crossed that you have a good outcome and thorough investigation there :luck: (I'm sure you will - from what I have heard he is very thorough). Most Lupus savvy docs are not phased by the amount of symptoms we have, they know the disease well and it's to be expected!

love
Lily

 

[LolaLola]

Dear Bex,
I am so glad you are booked. I am afraid I don't know any Hotels near the London Lupus Centre. You could always ask them for advice, otherwise anywhere near Tower Bridge is nice and close.
There are decent coffee shops near the Clinic with comfy settees.
Do not worry, you will be glad you went.
x Lola

 

[Ocean1]

Hello

So im leaving for London tomorow for my appointment with Dr D'Cruz, Im really hoping that he will be able to figure out whats going on with me and help me. So wish me luck and i'll update you all next week when i get home! Thanks for all your help so far esp LolaLola who encouraged me to go upto london :wink2:
cheers x x x

 

[greenhaggis]

Bex,

Hope all goes well, remember your list of symptoms and remove nail polish and make-up before apointment.

Love Lesley

 

[Lily]

Hi Bex,

Just wanted to wish you good luck :luck: :hug:

love
Lily

 

[keebler]

Good luck Bex. I will thinking of you.

:goodvibes:
Lyn

 

[purplesnowflake]

Good luck too. I hope they give you the answers you need.

Take care

 

[halfpintfl]

Hi Bex, congradulations on getting the appointment.
Yes, I deffinatly suggest that you take all of your lists.
You can hand them to him and say that these are for him to put
into your file and then he can review them later. That will leave
extra time for you and he to talk, be very open and honest, you will
doo just fine, I know it. Write us when you get back and get rested((((hugs))))

 

[Ocean1]

Hi
Thank you all so much for your well wishes it really means a lot!

So im back from London, and it went well i guess, it was very hectic with all the flights/trains etc and im pretty drained now, but it was worth it.

So i saw dr D'cruz and he was very thourough and listened to all my symptoms etc and then decided that i needed to have the Lupus screen blood tests, he agreed with my gp that he thinks its not Chronic Fatigue Syndrome and that there is something of a connective tissue disorder but is unsure as to what exactly.

So i had the blood tests, which were a nightmare! it took them 2 hours to finally get some blood and then they dont think they got enough blood for all the tests, so i may have to go to my own gp to have some more blood taken! does anyone else have problems with blood taking? they said im one of the worst theyve ever seen! i try and make sure i drink loads of water before the tests and make sure im warm, but they can never find a vein and then when they do they never get hardly any blood and then the blood normally clots in the tube to quickly and is useless! its such a pain in the bum!

So i have a follow up appointment in September and Dr D'cruz says he'll ring me when he gets the blood results, he also said that even if the bloods are negative in Sept he might start me on some treatment to see how i react to that!

So at least i feel that im moving forwards, and id just like to thank you all here again for being so encouraging, friendly and helpful,
Thanks x x x x x x

 

[Lily]

Hi Bex,

That's great that you have a follow-up appt so soon Not so great about the problems giving bloods though - how frustrating when you want answers!
I'm one of the lucky ones that have good veins, even though they have taken a hammering over the years :lol: from so many blood tests!

It's also good he will ring you himself with results, that's what my doc does to save me another trip up there. Good luck,

love
Lily

 

[Ocean1]

Hi

Just another little update, Dr D'Cruz wrote to me last week saying most of my bloods were negative and normal, however he wants to see me in September as he feels i may have possible mild lupus and/or behcets disease! I havent a clue what behcets is? anyone here suffer with this condition?

Still feeling pretty crappy But it was my birthday yesterday so i enjoyed that and i got a nintendo Wii so my arms are killing me today after playing the tennis game for too long :lol:

Hope your all ok
Cheers x x x x

 

[LolaLola]

Dear Bex,

It is obvious that Dr. D'C is taking you seriously.
He has a lot of respect for people who try to help theirselves and you have certainly done that.
I hope it goes well for you.
x Lola

 

[Clare.T]

Belated birthday greetings Bex! I hope you get lots of fun from the Wii, just take it easy.
At least you know that you couldn't be in better hands than Dr D Cruz.
I have heard of Behcet's but just know what I have read on line. Although I am acquainted with one person with it there's nobody on the forum with it. It is exceedingly rare in the UK but much more prevalent in the middle east and Asia, along the old Silk Road. The name is from the Turkish physician who described and identified it. There's only one diagnostic test if I remember rightly and that isn't always sure so a real expert is needed.

All the best
Clare

 

[Surferboy]

Belated Happy Birfday Bex.

So glad you are getting somewhere with all the tests. Did you see Dr D'Cruz at The London Lupus Centre or St Thomas's (sorry I might have missed that in your post)?

Keep us updated how you get along

PS I played the Wii yesterday and can highly recommend Tennis