I could SCREAM! You really couldn't make it up. - LUPUS UK

LUPUS UK

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I could SCREAM! You really couldn't make it up.

Boudica1 profile image
10 Replies

I had a dermatologist phone appointment on the 19th of February and told I would be having another skin biopsy.

Had to call GP today because feet and hands are in overdrive, Erythromelalgia.

She was checking my notes and noticed that the dermatologist had put me in for another biopsy in seven days. Nothing. NADA.

So now GP and I have decided that I have to phone the dermatologist secretary to tell her that I'm still waiting because the biopsy needs to be of a fresh spot from a new rash for accurate diagnosis.

No wonder the dermatologist is tearing his hair out because nothing matches the diagnosis of 4 years ago.

Then I was told that the biopsy would be in 2 weeks, finally 6 months later I finally got the biopsy appointment which was done on a old rash. So I got one diagnosis that was changed by another doctor one and a half years later when he took a very quick look.

Since then things have multiplied and not doing anything like either diagnosed problems (?).

Not a happy bunny 🐰 and I keep thinking what if it was a iffy mole and things have been dragging on for so long?

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Boudica1 profile image
Boudica1
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10 Replies
KayHimm profile image
KayHimm

Six months is hardly anywhere close to six weeks in terms of urgency. I can imagine you are fed up. Hope things get better as Covid cases decrease.

Take care and let a few screams out here.

XK

stiff19 profile image
stiff19

It’s far from ideal but hang in there 🙈 my urgent appointment still hasn’t happened over a year ago now .

It’s not the answer but not much choice really, hopefully if you remind them it will push them along 🙏🙏

Best wishes 🤗x

Boudica1 profile image
Boudica1 in reply to stiff19

Hi stiff19, I got through to the dermatologists secretary got the answerphone and she's on holiday (?) But got another number to contact her colleague who had just returned to work after being on holiday. It seems this one actually deals with the appointment bookings and she didn't have any info on me. She checked the dermatologist notes and could see that I should be having a biopsy asap not only because the dermatologist is confused with all the extra skin issues I'm developing but I've had to stop the Hydroxy for the biopsy so it doesn't squiff the results and everything is spiralling out of control.

So booked for Monday morning and bloods on Wednesday and then hopefully back on the Hydroxy 🤞.

♥️

stiff19 profile image
stiff19 in reply to Boudica1

Yay glad you now have an appointment , I do hope all goes well and it helps with bloods and a plan.

I emailed dermy Friday got a call yesterday to go in this morning. Just more talking , looking photos and don’t knows🤷‍♀️ For now.

Frustrating.

Hope the hydroxychloroquine helps 👍

How are you feeling now? You’d been through a lot and a loss last time we spoke, hope you are doing better 🙏

Take care best wishes🤗x

Boudica1 profile image
Boudica1 in reply to stiff19

Hi you know what it's like one minute you're fine and feeling great then WHAM. The increasing different types of symptoms are getting too much at times and it's frustrating not only for me but the dermatologist so we are both confused, hence another biopsy.

I know I should be grateful for the 3 monthly appointments but it does feel like a waste of time at times and they have more important things to do.

♥️

stiff19 profile image
stiff19 in reply to Boudica1

Yes I Definately relate 👍🙈

My dermy seemed confused today too and therefore I am also and frustrated.

Just don’t seem to move forward and no ones on the same page it seems. I don’t feel like I’m moving anywhere either, maybe am 🤷‍♀️ But doesn’t feel like it.

Hang in there Boudicca , I know it’s hard when unwell with many symptoms, but we need to 🙏

You never know the biopsy may be helpful 🤞 I wish they’d just biopsy one of mine. 🤷‍♀️

Take care stay safe and strong 🤗x

Boudica1 profile image
Boudica1 in reply to stiff19

Yes it's very frustrating for everyone and their extremely confusing with yet more symptoms. It's not helpful either when doctors in different departments can't agree and say maybe it's this and months down the road oh it's that not this.

All we want to know is what is it?

What can I do to help me?

What do I do if this symptom gets worse and just how ill before I pester GP or the hospital?

Mind you I have found that the poor A&E doctors are somewhat stumped when faced with someone who has multiple symptoms. 😷🙃🙈🙉🙊😷🤔🤔🤔😵.

,♥️

stiff19 profile image
stiff19 in reply to Boudica1

Frustrating and confusing I find. I look on forums I get told by docs to look things up to see if they fit. Erythromelalgia does (neuro ) dermy says no don’t think so 🤷‍♀️ , or someone will say about red shiny skin raynauds etc and how it’s treated, whatever it is that’s just an example but I get ‘mmmm’ that’s normal 🤷‍♀️ Or so often told I’m ageing so expect change, sorry I’m only 52 and change surely is a process not sudden. I can’t see how ageing is used for ill health.I don’t know it’s confusing, and if docs are stumped they should appreciate how hard it is for patient being stumped 🤔 for me I was hit by 🤷‍♀️ Bad episode of symptoms and never been same since🤔 it’s bound to be upsetting , I can accept change when I know why but hard to when I don’t know.

🤷‍♀️🤔🤞🤗x

Boudica1 profile image
Boudica1 in reply to stiff19

Yes like you I expected some things with age, it's normal....,.... But the amount of different symptoms especially those that even have the consultants confused is not all age. We know that and so do they even I can pigeon hole things down to age, gender, lifestyle and nutty even.

I remember as a child GPS saying " oh it's your age and growing pain". Then teens and onwards "oh it's your hormones", gender. Oh and don't forget the "your lifestyle", er I eat healthy home prepared and cooked meals, physically active, a job that entails being not only on my feet, moving around sometimes at speed but lifting things that post office workers said was to heavy. So I was and still am slim and fit with firm muscles that some young men could do with.

Now it seems with some things that it's back to " your age?"

Since when did you see a mature woman with Annular and arciform rashes, Erythromelalgia, red nailfolds but not infected? That's not even naming all the rest.

At times I feel like enough, what is the point of all these tests.

It's time to pace barefoot on the kitchen floor and put my hands on the wall tiles as well they are burning again but grateful that the the rest is sort of behaving apart from the dry eyes, nostrils and mouth.

Sorry if I'm having a moan I really don't mean to maybe I am going nuts 🤣😂🤣🤣😂😔🤣.

Take care.

💞

stiff19 profile image
stiff19 in reply to Boudica1

You are entitled and in the right place to have a moan, if you call it that, it’s good to talk to get it off your chest if only to temporary lighten the burden. I do it 👍 I can totally relate to you and what you say, I think we must both be going nuts then 🤣🤣🤣👍🙏

🤗🤗x

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