Update Of Today

Hey everyone,

I got to the ambulatory Emergency care unit at 10am this morning. Plan of action was bloods, Halter monitor & Dermatology Opinion.

Had my bloods taken which were ENA ANTI Ds DNA C2 blood test & more for autoantibodies.

I was told 10 days for results.

I met the Dermatologist, have to say I found him very arrogant.

His diagnosis I have vasculitis not aware of what form, & my blood tests don't really reveal anything which I was stumped by, & my condition will come & go like any But doesn't recommend any toxic treatment as the side effects can be worse than the condition itself.

Legs were examined & a biopsy denied..

He said we don't need to do a biopsy as it will only tell us what we already know. & I said " what exactly do you actually know" !! 🤷🏼‍♀️ because as far as I am aware my bloods do show a lot, & my heart is having AF episodes, my lungs have tiny multiple Granulomas, I have chronic sinusitis & vision issues, I also have lesions & my bones ache deep inside the bone I'm exhausted all of the time, I have lost nearly a stone in weight & my blood counts show that something is most definitely wrong, I said I've had amazing support awareness & advice from Vasculitis UK & I know now that I need to be under a multi disciplinary team, or a specialist centre who know all about Vasculitis, its dangers & treatment process.

As I read if ANCA positive & treatment delayed 90% of patients die within 2 years from respiratory failure or severe Organ damage.

He then went on to say I could have Hydroxychloroquine. & nothing else...

Was told to stop panicking & worrying as it's not dangerous or life threatening..

My father has had an email back from Lorraine Harper & shes happy to see me all I need is my referral from my doctor on Friday. 🤞🏻

Halter monitor didn't happen today so I will get an appointment in the post.

I ended up asking for a biopsy today & I had a punch biopsy for diagnosis on my left leg lesion. Told results within a month or more.

X

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  • Let's hope you get to see Dr Harper Laura. It must be in your GP's interest that a definitive diagnosis is ruled in or out and s/he seems happy to confirm that you have a form of vasculitis, so hopefully will agree that the referral is appropriate. We all have a fingers crossed for you! x

  • Ohhh me too ! 🤞🏻🤞🏻🤞🏻🤞🏻 toes are crossed too.

    & I'm grateful to you & all x

  • Laura, take Prof Harpers e mail to your GP and show them when you ask for the referral.

    I am speechless at the Dermatologist's response, they obviously have a very poor understanding of systemic Vasculitis.

  • Hi Keyes, yes I will do, my dad has printed of a copy of Lorraine's email for me to take.

    I am also. I won't be going to Cheltenham General in a hurry.

  • OMG Laura. I came across the same ignorance with a thoracic consultant at GRH. It took me 3 attempts before he referred me. By then my ANCA reading was off the scale. Luckily I responded well to treatment. Persevere. You will get there. Great idea of Keyes to take Prof Harpers E mail with you to your GP.

    Good luck. Keep us updated.

    Best wishes.

  • Laura, once you are in with Prof Harper's team the QE, rest assured you will be in good hands. I can't praise them enough. Good luck. Chris

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