LUPUS UK
20,831 members16,537 posts

Further harrumphing!

Just been to GP. Very nice lady who looks very sympathetic, looks in your eyes with her head to one side and nods a lot but who is frankly more clueless than any other GP I have met.

Showed her my swollen limbs:

GP: Oooh yes! They are swollen aren’t they?

Me: No **** Sherlock that’s why I’m showing you. (How I wish I could have said this out loud)

GP: How long have you had this?

Me: Well if you’d read my notes, my arms since 2007 but worse since October. My legs about 10 days.

GP: You are more sedentary now though? Could be lack of movement.

Me: I’m keeping as active as possible pottering about, yoga etc I’m not sat all day.

GP: Oh well I’ve no idea what it is because it’s not related to your diagnosis. Your bloods say everything is fine. Sorry I can’t help. Just rest and elevate your legs.

Me: 😱😱😱😱😱😱😱😱😱

Harrumph.

X

Ps neither of recent consultations have resulted in communication with my practice.

Pps Anyone any tips on how to keep active with your legs elevated?

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So she would fail to identify the patient with polymyalgia rheumatica and/or RS3PE syndrome whose blood maarkers are normal? That's one in five or thereabouts b^%%*"*$ then. Or the occult GCA patient who has woken up blind - normal bloods, so can't be anything wrong...

I do wish they would consider the PATIENT in front of them and their SYMPTOMS - not the lab results which can, oh horror, be wrong or inconclusive. For all sorts of reasons including the lab got it wrong.

I had 5 years of that mind - worked it out for myself in the end!

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Data not people. My pet peeve.

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Oh yes - shall we set up a box at Hyde Corner...

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Only if I can elevate my legs 😂😂😂

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You could lie on the floor and use the box to rest your feet on - and shout. I'm sure it would attract attention...

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I bet it would but from a different branch of the medical profession!!

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How about if all the people like you, diagnosed with conditions they don’t believe in or don’t think they have - took to the street or maybe GP surgeries in a massive protest?

Over a few days you could use wheelchairs, block the traffic and then have a “fatigue in” in parliament square - or GP surgeries all over UK - lots of roll out bedding, pillows bed sheets painted in words and pictures demanding that doctors treat you not your blood (red splashy paint of course!)? This could be organised through HU communities such as Thyroid UK - who’s many members are all in permanent uproar about not being able to access T3 and having to self treat etc?

Sorry- not that helpful probably. But at least you do know that the numbers in your situation are so great that you definitely could be effective on mass in principle?

I could join in the Scottish one with an image of me hanging on for dear life to a tight rope between two skyscrapers shouting “don’t worry about me - i can’t fall - I just have heightened health awareness!” Xx

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Twitchy will you stop it! I don’t want to add stress incontinence to my list of symptoms!

A mass lie down rather than a sit in. Could I have a bed with a traction contraption so I can elevate my legs?

X

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Well you’d have to be the regional or national organiser of this mass lie-in protest you see so I think this would entail certain privileges - traction thingy, commode for stress incontinence with tent etc for privacy, Wi-fi for a direct FaceTime link with me as the woman hanging between buildings up here in Scotland. Okay? X

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You’re on. National Lie-down Day!

What colour are we going for and we need a logo.

Grey for desperation and perhaps a thunder cloud?

But how will Brexit affect it?

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Maybe take colours from all the chronic pain charities - a rainbow?! X

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Hasn’t that been taken?

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Don’t know. My main disease colour seems to be blue - which is too old and conservative for me so I’ve given my Sjögren’s a young thorny devil as emblem - desert colours for a desert disease! X

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At least she was honest. " I would not see her again". My husband gets furious when so called doc does not read history before seeing you. Like one said you probably need gallbladder removed, when there wasnt one there. Good luck. Keep looking for better doctor. You deserve it. God Bless.

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I’m thinking Legs Elevenatedathons

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Sounds just like the consultation I had when I showed a rash I had to one of these female part time GP's a couple of months ago....point blank said she didn't know what it was so " wouldn't prescribe anything"!

Eventually I got to see a dermatologist who took one look & mentioned it looked just like Drug Induced Lupus. If I'd had a heart attack on the spot I wonder what that lady GP would have diagnosed that as?

My only alternative was to add her name to the (long) list of GPs in the practice I won't see again!

If you can - change GP practice....although theses days more young women are choosing to become part time GP's rather than taking up General Practice as a full time career.

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I’m a bit in the sticks so sort of stuck unless I want to drive.

Not one GP at my practice works full time including the men.

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Unfortunately being a GP is not the family oriented career it once was. I twice had a GP, , then when he retired went on to be a patient if his son.

Be the first to hear my great news MsAndyIvy!!

I DO NOT HAVE DRUG INDUCED LUPUS!

I saw my Dermatologist this morning & the histology report came back that my blotchy rash is 95% certainly a Post Viral rash following what I thought was Flu back in January. Didn't see a doctor then as there is nothing to be done except rest, & keep warm & hydrated.,

So relieved I was dreading having to stop RTX "just in case."

Hope your next GP visit us not as stressful!

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Brilliant news!

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Yes, isn't it...I am so relieved

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MsA, If it will help at all...those of us over 'here' can float single file to there in protest as an act of solidarity, with our feet up of course! Twitch can coordinate the t-shirt colors. Just know that I empathize with you. I have experienced that scenario at least 10x (in the last year). I send a hug (something stronger if I could). 🌷🍹

D🏃🏽‍♀️

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International already, we’re gaining momentum. Though I lost mine and have slept for 14 hours. This may be an issue co-ordinating things 😆

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I'm up for anything we're going to do!

By the way, any GP that does the looking - in- the - eyes - head- on -one- side- nodding - sympathetically - routine but is otherwise useless should be shrunk and made into something that sits on the back shelf of a car.

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That could be our ultimate tactic. GP shrinking! Anyone got a shrink gun?

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"Pps Anyone any tips on how to keep active with your legs elevated?"

Look, is it just me or....

x

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Yes it is just you!

X

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Story of my life x

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We should have a competition to come up with a new meaning for GP , I've thought of one but couldn't put it on here I would be banned . The actual meaning general practitioner makes me laugh anyway it implies that they are so qualified they no everything about every illness going which of course they don't , I saw a junior doctor a couple of weeks ago with yet another infection in the scar from my acoustic neuroma surgery , last September I was admitted with this because they wanted me to have intravenous antibiotics . He said what did they do last time you had this ? So I said I was admitted for a couple of days for intravenous antibiotics and then sent home with oral antibiotics , he didn't say much so I said well maybe if you look at the discharge letter from last September and give me the same antibiotics that they sent me home with , he did this and said if it gets worse go to a&e .

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Bless them. Too much time with books and not enough with someone with common sense.

General is just too ‘general’. I could be a GP: look up things on the net, copy articles from magazines and keep them in a plastic bag, make referrals when I don’t know, dish out a drugs checking on data base for correct dosage. Oh and look scruffy. Gone are the days of my youth when GPS looked smart and smoked pipes in their clinic!

Sorry but I haven’t found one who instils confidence in quite a while.

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Me neither they scare me nearly died due to an incompetent gp a few years back x

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My old GP used to ask me "What would you like me to do?" Help me!!!

My new GP is very much like your lovely GP and female. But I've found that if I do all the research I can lead her to who I should be referred to. As well as phoning a lot! Maybe that's the way to go now adays? But after 18 yrs of going I finally got a referrals, didn't take too long.

While waiting I went to see Dr Hakim in London who shed light on things I wasn't aware of. I have numerous symptoms that aren't fitting into one box. I wanted someone who specialised and could lead me to the right consultants. Because I've seen neurologist consultants in the past who told me I don't have a problem and just stop taking meds and I would be better, unbelievable! So I completely understand the agony of incompetent Drs or maybe not incompetent maybe they just don't care?

🌻🌻🌻

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I’m getting harrumphed out!

Latest is private neuro sends me his bill. So I chase up what he’s supposed to have done and he hasn’t done it, this is since early March.

So I don’t pay.

Yesterday payment reminder came through and low and behold so did a very chatty email from said consultant saying he had progressed things and apologising. Though he did try and blame my GP for not forwarding blood results (I emailed them to him the day after my consultation) and another consultant not forwarding by MR scan disc (which I had organised the following week and had confirmation of from other consultant).

So I am concurring with can’t be bothered but adding ‘money’ to it as well.

Harrumph!

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So you've paid private??? And still have no luck??? OMGoodness!

It's been 2 weeks Dr Hakim appointment and true to his word he has sent email that required referrals to GP were being sent out.

I live in HOPE! 👍👍👍

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Nearly six weeks and didn’t write to GP re: migraines!

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Not acceptable at all!

A few years ago as I told Melba1, a neurologist told me I don't have migraines. It's because of medicines and ago taking them. Even though I said I've had migraines since adolescence. He still insisted it was meds and I don't need them.

And I have to laugh because not 2 seconds after I wrote post about Dr Hakim emailing about letter to GP, I received an email stating it would be delayed because of admin and moving to new premises. Haaaaa

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Rereading your post and truly feel exasperated that you're being charged but not serviced! Just unbelievable!!!

I'm really sorry your going through this as well as being unwell. Drs seem to forget that they're dealing with a person who is sick.

We should think of something positive that we could do. Even if it's something just to make you feel better but have no affect on the system.

🌻☉🌻

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We’ve just been talking on a different post about neurologists telling us there’s nothing wrong and to stop taking our (life saving and necessary) meds! What is it with so many of them?? Is it because they don’t understand our diseases and we don’t have the same clear cut symptoms as the people they see more often, with MS for example where a lesion would give a definite pattern of neurological problems that a neurologist can see and understand? Whereas ours is more general inflammation that presents a more difficult diverse picture??

I think MsAndyIvy is right to be hurrumphing...

X

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AGREE completely! If it isn't straight forward labelling then either they don't have time, can't be bothered to research or don't care. Not sure really.

I asked my Optometrist, who never heard of EDS, wouldn't he want to research something he didn't know? He said "of course that's why I just wrote it down" But it was an old fashion Optometrist.

🌻☉🌻

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