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LUPUS UK
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Great news

Hello all, I thought I would let you all know.

As my doctor booked me into to see a gastroenterologist late November 28th I just couldn't wait that long so..

my dad & boyfriend have decided to go half's on all the costs & they have arranged a private appointment with head of gastroenterology at the winfield hospital next Thursday. (Private)

Was such a wonderful surprise this morning & I feel very relieved & happy that I have such wonderful supportive caring & loving people around me.

I couldn't wish for anything more right now.

They both said money means nothing but I mean everything !

Happy emotions.. 😅x

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How lovely of them! I hope it goes really well.

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Thank you TwitchyToes

It's been the best news I've ever had !

X

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Glad to hear you have very supportive family☺ we need love from our family more than anything else in this world. #thumbsup👍

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Dearest 021879

You are so right! Love is all around. ❤️

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Great news! I would encourage you to prep for this appointment NY getting the top 3 questions you want answered or addressed written down. Also go with a list of your symptoms and pictures of any rashes etc. This advice was given to by my consultant when they spoke at s conference and it has been so helpful when I have seen her as it endures the top most important issues are covered. I always prep in advice of my appointments. And when you give them a medical history, I would encourage you to tell them everything, even the bit you think probably aren't relevant, the more you tell them the more they can help you.

Good luck xx

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Hey happytulip! Yes it is 😊.

And yes I will definitely be preparing for this appointment. My dad is already on it which is good.

I'm

Taking in all the advice I get so thank you in advance 💜

My dentist has written a letter for me to give to the gastro explaining all of the issues I've suffered with my teeth due to excessive GORD- reflux. Which is a big help! I have had major issues with my teeth! Have you had any problems with yours?

I will make sure I mentioned the recent SLE diagnosis which is possibly contributing to the gastro issue as well as eating a surprise Scotch bonnet meal. I don't want to come away from the appointment empty handed so I will mention the lot.

Thank you so much for commenting Happytulip your a ⭐️

X

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Hi Laura. That's wonderful news. Your dad and boyfriend obviously care for you a lot. Look forward to hearing how you get on.

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Thanks so much Ludo, how are you doing ? X

They have been comparing photos of what I looked like this time last year. & They said they cant watch me whither away & suffering anymore. My GP received my case file from QEBH & hasn't informed me that was 2 weeks ago. So I contacted Prof Harper requesting a copy & she was more than happy to send one out straight away.

I think she wanted my gastroscopy booked in as urgent not for 15 weeks time.

So I'm glad I have the appointment 24th aug. I can hold on till then xx

Yes of course Ludo and thank you for keeping In touch xx

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Hi Laura

Great news your family are paying for a private Gastro appt for you. Your a very poorly lass and they must be worried about you and want to help. Good luck for it , hope it's helpful . Keep us posted X

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Hey misty! I love your name ! So Pretty.

Thank you 😊 & thank you for noticing & understanding how poorly I really am ❤️ my aunties & uncles +cousins have been told the diagnosis & they said " well she looks fine, she's lost weight which is a good thing for anyone" (ignorance)Obv there's no words to justify the way I feel..

Thank you so much for commenting Misty, I will Keep you posted. I was saying to my mum how wonderful this community is & how truly amazing the people are within it. The outside world is a relentless pursuit but the lupus and other forums here is my little world and it's a wonderful place, so much support care and encouragement. That's rare these days, I feel lucky to be apart of something so extraordinary xx

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Hi Laura

Thank you for your lovely comments re the forum and lupus community. My name is after a black cat I know called misty. I look forward to learning how you get on with Gastro. I'd seen your earlier posts and realised how poorly you are. Fingers tightly crossed for you. X

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Hey I wondered what the story was behind your name :)

I posted about a blood result that I received today. Slightly confused as I still don't understand ANA etc. It's 1:1600 ?!

Keep in touch 🐾

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Hi Laura

It's good you have a positive ANA result whilst it's non specific for lupus it means there's something going on with your immune system which is what you need!. It also depends which pattern it is as to which kind of auto- immune illness it could be. . Your GP should be referring you to a Rheumatologist!. Your making progress now Laura. X

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Thank you misty, I sat up mostly all night & tried to educate myself. I have a speckled pattern? So I guess that means it's in a category of what else could be wrong ?

I've made an appointment with my GP to talk about referral to another Rheumatologist as the 3 I have seen prior said i didn't need treatment for anything I had. They all work in the same large department at our hospital. I've also asked to have a urine dip test as it's much worse, I get pains in the back along the flank area.

My urine is dark with foam & loads of bubbles & it smells rancid ! I've been a few times and they've not dipped it since December & I was sent away with nothing I just need a proper check up.

I'm waiting on a letter from the Vasculitis specialist as she was the one that diagnosed lupus.. I just have a funny feeling that I'm gunna be getting on another rollercoaster. X

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Hi Laura

I've got written down that if you have a speckled pattern then an ENA blood test needs to be done by a Rheumy as its more sensitive for lupus!. I'm sorry your having such a battle to get diagnosed despite being so poorly. I guess the three Rheumy's you saw all stuck together as in same hospital. Are you near a lupus centre of excellence or were they all in one?. I hope you can go soon to a different hospital. Keep fighting, I know you'll make it. X

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