Vasculitis UK
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Getting ready to go QEBH

Hello everyone.

I woke up singing follow the yellow brick road.. I guess today is my first step to a brighter place :) oh I wish I had a pair of those GORGEOUS ruby slippers !!!

No more sleeps, today is the day :) looking forward to meeting Prof Lorraine Harper.

Just wanted to say a BIG Thank you to all of you, for helping me get to this point in my journey If it wasn't for V.UK & you beautiful people I'd still be lost & wondering. So thanks again for all the advice, encouragement love & support.

The light at the end of the tunnel is the brightest it's ever been.

I'll give you an update later.

Hope today is kind to you all

Much love ❤️

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Hi Laura,

I really hope you have a positive appt, can't wait to hear how it goes.

Lynn

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Best of luck Laura. Write down everything you want to ask in case your mind goes blank - mine does! X

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Good luck Laura.. thinking of you x

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Awe thanks Johanna xx

Yesterday went well, I've just updated on how it went x

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Best wishes for today. Any chance of getting someone to go with you? I find that two people do a much better job of taking in what is said.

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Hey Wriggly,

Thank you. I've just updated you all with a post from yesterday. My dad went with me. Thankfully ! I felt better with him there & your right it was a lot to take in & with a second pair of ears it was most helpful ! :)

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Hey Everyone

So yesterday's appointment was positive, Lorraine was lovely & we had a very long discussion about my past & current symptoms. She gave me a thorougher examination.

Of my body, my breathing, pressed on my left kidney & I cried!

We're starting from scratch.

I met a lovely dermatologist who examined my lesions, & decided to take 3 skin punch biopsies from the same ulcer/lesion. Diagnostic tests for Vasculitis/SLE. Immunofluorescence

So I have 3 stitches, removal in 2 weeks. This lesion is different to the rest.

So it's VERY sore today.

I had lots of different blood panel tests.

I gotta say the nurses are amazing at QEBH, very welcoming, funny, I felt very comfortable & at ease.

Lorraine has ordered for these procedures,

Endoscopy

Nasal Endoscopy

Abdominal Ultrasound

E.N.T sinus scan

Awaiting for my Cardiology results from Cheltenham general hospital, if she's not happy then she will arrange for it to done in Birmingham.

I'm due to have all this done over the next few weeks. I'm due to see Lorraine again in 4 weeks time.

I've asked if I can be put to sleep or sedated for both Endoscopies as I'll panic too much. I can't swallow tablets due to my gag acid reflux can barely swallow food at the moment

I had one back in 2004 & it was horrific!

I was asked if I have been to any tropical places or if I have ever been stung or bitten by an insect and it clicked !

Back in 2008 I was on holiday in Spain & was stung on my left buttock cheek by a scorpion. We flew home the next day & I was very unwell, I couldn't sit down, I was sweating profusely, I had the shakes was being sick.

As we landed I noticed I kept loosing the sensation in my leg, & I had a black line from the bite moving down my leg I couldn't walk without holding on to something. I rang my dad & he was already waiting in the car park.

We drove home stopping every so often so I could get out and move about. Don't know how I lasted..

I know at the time I should of just gone to any hospital but I am so stubborn !

Arrived home I couldn't take it any longer. I went straight to the hospital, where I thought I would be given some pain relief.. naive.

They rushed me straight into surgery.

The sting was still imbedded in my skin. Which formed a large abscess, the large instrument reminds me of what they use during a punch biopsy. But on a big scale. Like a apple corer. I had a very large deep hole in my cheek that needed to be packed every day for 3 months. I have to say I would of rather of gave birth. It was the worst pain I've ever had !!

They said if I'd of left it another day i wouldn't of made it.

So I'm wondering.. could that of caused all these problems ?

I didn't think of it till yesterday it was such a bad experience.

So all in all it was good and I know that prof Lorraine Harper is gunna do whatever she can do get some answers & a diagnosis.

My partner was a bit disheartened when I told him the news that I was coming home & had to wait for appointments in the post to go back to QEBH, I guess he thought it wouldn't be months of waiting again.. but I said There is no such thing as a magic wand. It's gunna take time. Rome wasn't built in a day. I know that I've got a great specialist now & many more to meet over the next few weeks. I'm having tests I've never had before, so it's a new path & I know I'm gunna get the answers I need. X

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Hi Laura,

So pleased to hear this, it sounds like they were very thorough and you are in expert hands.

As the treatment for Vasculitis is toxic drugs much better to be very thorough and get the diagnosis right. Going to a specialist clinic makes all the difference.

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Hi Lynn,

Yes they were all great, I did say I'd rather have all the tests under the sun before I start any toxic treatment.

I was asked if I was given an anti venom injection after my deadly scorpion sting, and all I remember is going down to surgery.

So I'm gunna try and get my hospital document from that time.

Thank you for everything I wouldn't of had the opportunity If it wasn't for you x

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Hi laura I'm glad they are looking everything so thoroughly for you - that's really positive. I don't think you'll have to wait too long for your follow upappointments hopefully they'll have been seen as urgent. That's strange being asked if you've been travelling - I took 4 months out to see the world about2 years before becoming really ill & went to some pretty remote places in Asia and Peru - although I wasn't bit by scorpion. I've never been asked about that? Best of luck laura onwards & upwards xx

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Hi Katie, Yes im happy it well, am literally dreading the endoscopy's I'm really really anxious about it. I've been a nervous wreck since it was mentioned. Yeah I didn't think about the sting. But I'm also allergic to insect bites & have been stung & bitten many a times. I didn't think it could be connected, but then again who knows. My immune system has been poor ever since. Take me ages to get over bites & stuff. Just effects me systematically.

Thank you Katie xx

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Such positive news Laura. You know I was bitten by something in America which caused a severe reaction the month before my symptoms started back in 2004. I doubt it was a scorpion though! Could be a link there with immunity response triggering vasculitis in those susceptible to it.

Your being well looked after now which is great news. Good luck with all your tests.

Best wishes x

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Thanks Ludo :)

It was funny place where I got Stung ! Friends & family still laugh about it today ! I can't even touch the scar it just makes me cringe !

It's uncanny that a few people have been bitten prior to onset of symptoms or illness.

I've got a horse fly bite on my arm that's infected at the moment. I'm soooo prone to infection.

Think I need a bubble wrap suit !

I always look forward to the summer just not the bugs.

Thanks Ludo your a ⭐️ xx

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