Boy, do I need a new GP . . .

[Carcrashgal]

Morning, all. Anyone know a good GP in north-east London? Some of you may remember my pain when I discovered a couple of weeks ago that my (excellent) GP had thoughtlessly gone and retired . . . well, this morning was my first appointment with my potential new GP. If I say it didn't go well, I imagine many of you know what I mean. I won't bore you with most of the details, except to say I was informed quite categorically that *all* lupies have the butterfly rash, and that my GP was wrong to confirm my lupus (when I was in the middle of a flare and all the bloods were screaming positive) because 'we're GPs and we don't confirm things like that'. Oh, and I asked to be sent back to the rheumy to see about the long-term use of Plaquenil - can't remember who brought this up a few days ago, but obviously I do need that checked - and was told that *he* would write to a rheumatologist to enquire. I could telephone in 2 weeks to find out. Oh, and I should take a diet sheet and lose weight. And he'll see me in a year . . . ARGH!!!!!!!!!!!!!!!! This is *not* the person I want dealing with my long-term health problems!!!!! So now begins the long, tedious hunt to find a doctor who I can trust, who will listen to me and treat me like the intelligent adult that I am, not some overweight malingerer that this doctor obviously sees in me.

[Slowmo]

Hi, sorry not in your area so can't recommend anyone but really feel for you. This illness is tough enough to deal with without people making you feel a whinging malingerer!

Do your best to find another GP and all the best.

[Carcrashgal]

Thanks, Slowmo! Don't worry; I'm not giving up. It's just I'm so *angry* right now, and the really great thing about this forum is that I can vent to people who *really* understand me. I am enormously luck because I have a husband who may now be healthy as a horse himself (a healthy horse, of course!), but who completely understands my frustrations having nearly been killed as a student by doctors repeatedly not diagnosing his hepatitis (because young men his age didn't get hepatitis for no reason). Admittedly, the initial diagnosis was screwed by gastroenteritis - but for *two* years? So he understands more than most. But . . . but he doesn't feel my pain (as it were) and you do, and that's what's invaluable about this forum . . .

[sharon53]

Hi Carchrashgal

Sorry to hear that you are having so many problems, sorry I don't live in your area. Your new doctors is talking rubbish I have had Lupus for over 10 years and I have never had a butterfly rash a little mark comes up now and again but never a big rash. As to your rheumy at my hospital you can phone up and anytime and tell them you need to see someone and they will try and fit you in as soon as possible you don't need to go through your doctor.

I hope you find a new doctor soon who is understanding to your problems.

[Carcrashgal]

Thanks for that, Sharon: I have always gone through my doctor (which worked fine when I had a doctor I trusted!) so I might just try that for now whilst I'm roadtesting GPs . . . Cheers!

[christin777]

I know of a wonderful Doctor who owns his own clinic, has other M'D's on staff and the same nurses etc for over 20 years.

I have been his patient for 21 years. They deal with every ailment you have and use modalities from around the world. The Doctor won a Global Award for Health Care in 2006. You would have to fly there and stay a few weeks.

I know of others from the UK who have been there; a majority of patients are from Canada. I am in the US.

The Clinic is in Tijuana, Mexico. drcastillo.com. You can even e-mail the doctor. I have been pain free and in re- mission with SLE for 20 years now. I visit the clinic annually. I have been on no medications for 20 years. You can find me on the testimonial link....I live in Prescott Valley, Arizona.(Information is on my testimonial)

[Carcrashgal]

Thanks Christin777, that's certainly something to consider if/when my lupus gets worse; right now I'm lucky that it's relatively mild (in fact the car crashes have caused many problems that need dealing with). But it's always good to hear of wonderful medics, so thank you for passing that on.

[alice_sportyauthor]

I've only had Lupus diagnosed for a very short period of time BUT I've had low platelets for nearly 20 yrs (REALLY LOW). Have had every kind of Doctors response, including the ones who only start looking at my notes when I am sat in front of them and I SEE the colour drain from their faces and the sweat break out !

I would say ask around for recommendations, but also remember that everyone has a bad day / makes mistakes. I like my GP but sometimes she doesn't agree with my diagnoses and I have to go back a second time, once I've proved that her first idea was wrong and mine was right !!!

With the Lupus she thought I had some form of arthritis so I won 10p when I was confirmed as being right that it was Lupus!

So, give every Dr a second chance. And remember the ones who seem brilliant first time out might not be so good a couple of visits down the line.

[Hidden]

Hi carcrashgal, do you remember me before with the 2 absent gps. One now on TV giving Botox, and the other, being a pervert ??? Well I cannot believe your luck, !!! Don't put yourself through this humiliation anymore. Go elsewhere. Apparently gps are paid per patient, and if this is true, they don't deserve anything in your case. Take no notice about the malar rash, it's not mandatory to have this. I would ring rhuemys secretary, and explain your dilemma. The main hospital switchboard will put you through. In the meantime, check out other local gps. It's best to stay within your local health authority, as communication is difficult otherwise. Your GP cannot stop you from contacting rheumy, by the way. Good luck, act now as you shouldn't be without a GP.

[Carcrashgal]

My husband's wine has just gone up his nose! (I might not have shared your previous post with him!) 6161, not only do I remember you, I always check out your posts, because you're so sensible! And you are, of course, exactly right, and I hope you'll be pleased to know I already spent this afternoon checking out other surgeries in my vicinity, plus I sent the practice the very excellent 'lupus guide for nurses' put out in 1998 by Angie Barwick, then Sister/Lupus Specialist Nurse at St Thomas' and pointed out that not only had Dr K been rude, he hadn't even checked my BP - so I'll probably be banned anyway, for having the temerity to tell a doctor he's a ****wit . . . I'm inspired by 38 Degrees and change.org and the rest -democracy in action - and I became conscious that we put up with this rubbish all the time even when we *know* we know better! Well, I've had enough.The last time something like this happened a registrar in the pain clinic told me: 'You suffer from chronic pain and that's never going to go away' - and that's true, at least right now, but doesn't mean I shouldn't try to cure what's curable! - 'so just because you can probably talk someone into doing some procedure you've heard about, you're never going to get better. . .' I'd gone that time because after having had 2 cervical discs removed (and replaced with carbon fibre cages; stopped me being paralysed; genius!) , my *hip* had given way. Turned out it was because it was propped up on a sandbag for the 23-hour-surgery and it did get better; it just took a year. Unfortunately for the registrar, the consultant and I (sadly, he too has retired) were writing a book together, so he was informed in words of one syllable that pain management was not the career for him . . . but how many other people did he push to despair, I wonder? We have *so much* to contend with. Medical staff who are not on our side are the very last thing we need. So *thank you*, for making me laugh, and for reaffirming my decision. We lupies rock! Jo

[bluebell99]

Hi

I advise doing a bit of research and printing out the well publicised information that you can have lupus without the rash.

My GP insisted all my symptoms, photosensitivity, Raynauds, fatigue, joint and muscle pains, ulcers, etc. were psychosomatic so treated me for TEN years with one anti-depressant after another. Like an idiot I completely trusted her. I had to go to see her one time and she was away, so I saw the locum. She was young and enthusiastic and took all my symptoms together, not individually, sent off for a blood test, which came back ANA positive and suggested lupus. I had never even heard of lupus before, and had no idea of what it entailed, so it was a complete surprise.

Unfortunately she could not refer me to a rheumatologist, my proper GP had to do it. She flatly refused, stating she was 99.99% certain I did not have lupus, so I struggled on with more and different antidepressants. I even had counselling for my "depression". The counsellor said she could not help me as she thought my various illnesses and symptoms were real. Doctor was unmoved.

Fortunately, we moved home into a different county. I registered with the new doc, pointing out my positive ANA. He said "Hmmm... you don't seem to have a malar rash" I wondered if I would be fobbed off again, but he gave me a referral anyway... and the rest so to say is history!

Don't give up, change docs if necessary, arm yourself with information and be pro-active. I wasn't and lost ten years of my life. I feel foolish now, but then I believed doctors were infallible, now I know they make mistakes too.!

Mostly, they don't like to be proved wrong.!

Good Luck.

Nancy

[Carcrashgal]

Nancy, how dreadful for you - and thank heavens you moved. I hope you told your ex-doctor how wrong she'd been. I emailed the surgery a really good piece about lupus yesterday and I'm about to print out a wodge of stuff too and physically deliver it, just to make absolutely sure he pays attention. What makes this even worse is the doctor told me he had a doctor friend who suffers from lupus . . . so you'd have thought that would make him a bit more knowledgeable, not less. I am enormously lucky that my previous doctor was *not* like that, so at least I have the diagnosis (even if Dr K dissed it *because I had not had a biopsy* - he kept touching my hand and saying that was the only way to diagnose lupus. What rot! And this man's responsible for the health of thousands of patients . . . let's hope he can manage the more basic stuff!) I know doctors have bad days too, but there is no excuse for that sort sort of behaviour - and I've been plagued with it since I was sixteen and fell off the pavement; a year later the 'sprain' was finally diagnosed as broken ankle and ruptured ligament, proving I was not the malingering teenager they all believed, Sadly, the physio had done so much damage I've not walked unaided since - and that was a long time *before* the car crashes. That's why this doc doesn't get a second chance. Thanks for good wishes, all; I'll let you know what happens! And now I'm off to sing at the South Bank as part of the weekend's Big Chorus. Hope you all have a good day! Jo

[Hidden]

Me again carcrashgal, "fell off the pavement", !!!!! Are you one of the ' borrowers', haha. Let's face it you are a walking disaster. I don't even want to go there, with the car crashes. Seriously, glad we have all bullied you into action. I will make sure to watch the news tonight incase there are reports of someone falling in the Thames...... I will just know it's you. !!!!!

[Carcrashgal]

I know, I know - I used to tell people I'd been run over by a bus, so embarrassed was I by such a *stupid* accident! (And I should point out, for the record, Not One Car Crash was caused by me! Just in case you were wondering . . .) Right. Repeat to self: I will *not* fall in the Thames . . . I will *not* fall in the Thames . . .