Lost For Words!!!!!!!

[Sher78]

Well I had my Rheumy appointment with the slightly famous (only cos I go on about him all the bloody time!) Dr. King.

There I was, all prepped & ready 4 our argument (this is basically standard practise at my appointments as being a relatively newly qualified Consultant, he tends 2 think he knows it all, regardless of whatever evidence 2 the contrary is shoved in his face), armed with basically what can only b described as a novel-sized stack of papers, outlining the signs & symptoms of various autoimmune conditions, I wasn't in the mood 2 b fobbed off after having had 2 wait 6 months 2 c him when I should've seen him back in October.

I was ready 4 him.

What I WASN'T ready 4 was the bloody great smile on his face when I walked in2 his office as he stood, extending his hand 2 shake mine & declaring how wonderful it was 2 c me (& take note, as an EXPERT in sarcasm myself, there was not a TRACE of it in his voice whatsoever!).

Ok, this threw me TOTALLY off balance.

I was examined (as per usual) & Dr. King asked how I had been the last few months & if there were any issues I'd like 2 discuss. He sat patiently, listening intently as I went through my little list of things, the reasons 4 my thinking & what I would like him 2 do about them.

"Hmm, I can see why u're thinking these things & I am inclined 2 agree with u" he said.

What?! Have I suddenly been transported 2 another planet or stepped in2 the Twilight Zone? (4 those of u youngsters, this was an old TV series that had absolutely NOTHING at all 2 do with vampires falling in love with humans & twinkling all golden like in sunlight).

Basically, in return 4 giving him a pint of my blood, 10mls of urine & a squeeze & feel of my bones & joints, he gave me a lot of answers, an x-ray appointment & the promise of reviewing my notes with the possibility of adding 2 more AI conditions 2 my diagnosis' after some research & biopsies. And it was all delivered with a smile. At this point, it wouldn't have surprised me if he had offered 2 pop off & make me a coffee!

The moral of the story, never have any expectations, things can only surprise u then

[sammiebabe70]

Sorry but this did make me giggle, im layed up in bed feeling sorry for myself and you have just put a smile on my face and made me giggle

[Sher78 in reply to sammiebabe70]

Bless u, I'm glad it's brought a little cheers 2 u're day. Feel better soon

[Miev]

I allways have a big smile on my face after reading your stories.....

[Sher78 in reply to Miev]

Thanks Miev. Nice 2 know I can still do SOME things

[lupylucy13]

Hi Sher78,

I agree with you entirely , I have a rather strange relationship with my consultant , sometimes we get on and sometimes i feel the appointment is a waste of time and i feel like a hypochondriac.At my last appointment I was ready for the sarcy comments about how I have mild lupus even although I feel hellish when he was as nice as ninepence and was very helpful for a change ! I just smiled sweetly I couldn't believe it ! Maybe there are now happy pills for Doctors. Lets hope we have a good appointment the next time !

Take care,

Lupylucy

[Sher78 in reply to lupylucy13]

I think a good relationship with u're rheumy is so important but like u & so many others say, sometimes it's very difficult 2 have that. I think being open & honest helps.

I remember actually trying 2 reason with him b4 & saying something about us having a clash of personalities & regardless of whether or not we actually liked each other, he had a duty 2 give me the best care & treatment possible & that I found him very difficult 2 deal with as his manner was very non-chalant & I was not a little puppy without a mind of it's own (no offence intended 2 any Dog lovers out there!) that would go away happily wagging it's tail after being given attention. He didn't know me 'personally' (as my previous rheumy did) therefore could not possibly comment on whether I was acting out of character or not & things were 'normal' 4 me (u can only tell so much from notes) but that if he spoke 2 any long standing surgeon/Consultant that I had been under, they would all confirm that I was probably 1 of the most co-operative, level headed patients they had seen considering everything (of course it helped that I actually worked with half of them so they knew what I was like as something other than a patient).

That was over 2 years ago & we've had shouting matches since so I don't think he actually took any notice of me anyway lol!

If they ARE all suddenly on 'Happy Pills' then best we run around the whole country shovelling them down every medical professional's throat. Just 2 b on the safe side

Maybe take some1 with u 4 u're next appointment. Who knows, they may b different with some1 else there as witness :/

[scoobydoo1 in reply to Sher78]

ha ha ha may try the slipping them happy pills at my rhumatologist appointment.

realy happy it went so well, one thing i have found works so well is that i document all interactions and it scares the hell out of em on one hand on the other you have evidence from a variety of sources making it easier for them to help you. they know that i update my diary and give them a copy at each appointment. again well done, realy good news

[Sher78 in reply to scoobydoo1]

Couldn't agree more, they tend 2 recompose themselves when u bring out a dictaphone or something, funny that

[copdber]

That was a brilliant appointment. I'm happy for you and enjoyed reading about it you made me smile.

[Sher78 in reply to copdber]

Thanks copdber

[Hidden]

Between the lines: someone else complained?

[Sher78 in reply to Hidden]

Maybe, guess we'll never know. Either way, it better not b a 1 off or there will b trouble

[SarahHeney]

Had he just been on the "Listening Skills" course ;-). Seriously though, happy for you x

[Sher78 in reply to SarahHeney]

Lol! Well I 4 1 know I never really used 2 take any notice of all that malarkey on the training days (the thing is we had 2 do it EVERY YEAR & it was always exactly the same word 4 word so 4 those of us who had been there a fair few years it was kinda already etched on our brains lol!) but u never know

[Purpletop]

He is probably reading this forum and recognised you from your picture, so on best behaviour.

What other 2 AI and when will you know the result?

[Sher78 in reply to Purpletop]

Sneddons is a very big possibility (I'm ticking every single box bar seizures). He's actually going 2 research it, go thru my notes again with a fine toothed comb & then work out the best way 2 'clinically' test me as MRI's, ECG's, EEG's, even skin biopsies have a tendency 2 come back clear with Sneddons. Apparently it's more of a pig 2 diagnose than lupus but we'll c. I'm hoping it turns out 2 b positive as at least then it would explain a few more things & I wouldn't b worried so much as there would b a reason 4 these other nasties.

I mentioned the Sneddons as it's something I have been looking in2 4 a while now but he said there was another condition he wanted 2 check 4 but had 2 speak 2 neuro & haemo first. I didn't ask what as I think I was just too overwhelmed with how accommodating he was being. Guess I won't hear any more until he's sussed out how he's going 2 check 4 the Sneddons :/

[Purpletop in reply to Sher78]

Lets hope not Sneddons, I've been worried about Sneddons for some time now. Here is a link to another forum discussing Sneddons if you're interested inspire.com/groups/rare-dis...

[Sher78 in reply to Purpletop]

Thanks 4 the link, will have a look in a bit. I'm really hoping it is in all honesty as I'm managing 2 control the problems it's causing, but no 1 seems 2 b able 2 give a reason 4 some of the things I'm experiencing so at least if they say 'Yes, it's Sneddons', I can stop worrying about it being something more sinister & just get on with it. I don't mean 2 sound all blase about it but I find that the 'not knowing' & not having an explanation 4 certain things a more frightening prospect sometimes as it can send u're mind in2 overdrive & make u end up thinking the worst, which in turn as we all know can cause havoc in other areas & if ALL my flares r gonna b like my last 1, that is certainly a road I am not willing 2 go anywhere NEAR

[Purpletop in reply to Sher78]

If you have a look, you will see many of the contributors have similar symptoms to yours and are on not much more than warfarin which controls the symptoms. I understand what you mean about wanting a diagnosis, many time Sneddons is confused with APS and many symptoms that are attributed to lupus (such as the corn beef skin) are present in Sneddons, so I'm not surprised that it is so difficult to diagnose. And specialists in diagnosis are very rare. The forum is mainly US so not that useful in terms of finding out the best hospital etc but has the advantage of understanding other people's experiences. I saw, for example, that some of them had their Sneddons diagnosed with a skin punch biopsy. Who in the UK is able to do that for Sneddons, I don't know but hopefully your new best friend the young doctor will be keen to discover. Let me know how you get on, please? Take care xx

[Purpletop in reply to Purpletop]

I meant to add that it looks like the level of INR for alleviating Sneddons symptoms is different to that for APS, can't remember if higher or lower but maybe that is something that will improve your quality of life quickly.

[Sher78 in reply to Purpletop]

Skin biopsy can b done by most medics & we have dermy specialists here that can analyse them. Definitely have APS (no doubt of that at all, Sneddons is being looked at as an 'Add Along') but cos of a lot of neuro problems I'm having & conflicting results as 2 whether it's cerebral lupus (cns lupus HAS been confirmed but does not necessarily indicate CEREBRAL lupus). Also explains why I was absolutely fine when my INR range was running at a higher level & all of a sudden they drop my range (4 the first time in 15 years) & the next thing I know I've turned in2 some psychotic, deranged banshee who c's the most peculiar things & has conversations with thin air & gets pi**ed off when my other half doesn't make this entity feel more welcome lol! Over the last few months, we have noticed little periods of BIG improvements when my INR has gone a little off kilt & veered up 2 the higher end of the scale again, only 4 things 2 go all odd again when the blood starts 2 thicken up. It seems like too much of a coincidence :/

The funny thing is, I was always run on a higher level than many APS patients & would always get frowned upon when they would ask my range & question why it was so high until they checked my notes & say that it was the range I had been set (my original Rheumy set my target range when I was first diagnosed & it was only when he retired & another rheumy dropped my range saying that APS sufferers didn't need 2 run at such a high level). Makes me wonder if there's something in my notes as 2 why there was a particular reason I was put on a different range.

The thing I don't get is why mess around with things when they're running perfectly well?

As u know Purpletop, I ONLY take the warfarin now anyway (& the antipsychs) treatment-wise & regardless of what else they decided 2 label me with, as far as I am concerned, pain management rather than 'treatment' as such seems 2 b the best option 4 me. I will of course keep u updated though x

[Purpletop in reply to Sher78]

ok, one last thing and I'll leave you in peace - CNS and cerebral lupus respond to steroids, Sneddon's doesn't (because the latter is not caused by inflammation). If in doubt between these groups, a trial run of steroids would help diagnosis but I realise you're keen to stay off the pills. I suspect that if you raise your INR to the right level for Sneddon's, you might not need your antipsychs but as you say, why mess around with a beautiful thing. Good luck - over and out!

[Sher78 in reply to Purpletop]

Loll! Refuse 2 touch steroids full stop, regardless, they've done too much damage already but if it IS Sneddons as well as all the other cr*p, it would certainly explain why even on the max dose of Hydroxy I STILL continued 2 slide

[janiceray]

were you secretly filmed!!!!that would account for it,I will look forward too the Documentary .LOL

[Sher78 in reply to janiceray]

Maybe....4 the new 'Thinkbox' advert! Instead of 'Harvey & Rabbit' it's 'Sher Sher & King'! lol x

[pollyanna]

I am glad your appt went well, it did give me a smile this morning when reading it I have to agree with another comment, that someone has complained! But as long as he is now doing his job properly, then thats all good

[Sher78 in reply to pollyanna]

Exactly!

[fairies]

Hi all,

this is my first day on here and ive chuckled so much at your story, glad you got such a positive experience with your Rhummy it makes a change to hear that people are finally being listened too! I will look forward to my appointment with the hope that i will get some answers too. Best wishes to you all x

[Sher78 in reply to fairies]

Fingers crossed 4 u. In all fairness, I was very spoilt with my as rheumy as he was the 1 who diagnosed me (when I had just turned 16) as he was actually a specialist in lupus (his wife had it so it looked upon it as a personal mission 2 try & help us all as much as possible as he witnessed on a daily basis, not just in a professional capacity). I had him 4 16 years (until he retired) & he had seen me through miscarriages, studying nursing, a marriage, a divorce, having 2 children, being pronounced dead, u name it! Nothing was ever too much trouble 4 him & he would go out of his way 2 explain things in a way people would understand, even if he had 2 do it 10 times! I could go 2 him with the silliest little question & he would never make me feel stupid 4 asking.

He never judged me or chastised me 4 some silly things that I did in regards 2 my health which far too many rheumy's do, he realised I wanted 2 LIVE my life & didn't want 2 compromise on HOW I did.

I remember bumping in2 him at work once & telling him I wanted 2 have fillers 4 my nose 2 mouth lines as they were really getting me down & wanted 2 know if medically it would affect the lupus etc. He actually laughed & called me a 'Doughnut' (if u can believe it!) & said that he couldn't c why I was so upset about them but if I was determined 2 have them done, as long as I only had certain types of fillers (which he actually wrote down 4 me in the middle of the canteen bless him!) there was minimal 2 no risk.

The point is (after I've rambled on 4 ages here!) I think I would b extremely hard pushed 2 ever find a rheumy who I would consider as knowledgeable, honest & excellent all round as Dr. Hickling & maybe it's time I stopped comparing them all 2 him.

[LupusKaren]

Sher, what a belter of a post, chuckling away here. I am old enough to remember the Twilight zone, and have also been on end of sarcastic consultants, that patronizing tone that have stopped short of patting me on the head and telling me and I am not joking, if your tired go to bed early, for your migraines, take a paracetamol, all behind me now, as I have an excellent Rhuematologist, we have a stable relationship, and I have never been made to feel awkward.

These days I am afraid I take no rubbish, if I have made a monumental to get into their office, and you can all relate, its like planning a route march up Mount Everest if we are in flare, then I expect to be treated with respect.

Brilliant appt for you, and well done also on being prepared with your novels (with back issues no doubt LOL).

[Sher78 in reply to LupusKaren]

Oh yes LupusKaren, I had volumes 2, 3 & 4 at the ready just in case! Totally know where u're coming from, there's nothing worse than being made 2 feel u're a hypochondriac & then being condescended in such a way (I think we've all had enough of that getting some1 2 listen & diagnose us in the FIRST place so u would think that the rheumy's would take this in2 consideration).

Glad 2 hear u stand up & open u're mouth. I think the more of us that challenge & question the medics/treatments etc, the more knowledgeable we ALL become & the more understanding there will b

[brave]

glad it was all worthwhile sher;)happy days ;))))))

[Sher78 in reply to brave]

Thanks brave, was chuffed 2 buckets. Wish we could all get decent responses from our appointments

Been bought back down 2 earth with a bump though, got a letter from ESA this morning saying I must go 4 a medical with them & they've always left me alone b4. This is the problem with them clamping down on everything, those of us who r GENUINE have 2 prove ourselves. Will never understand why they just can't accept the word of u're medics & specialists Hence I am in a sh*tty mood now, grrrr......

[Shanti]

Got to admit I had a giggle to,however it has helped me feel a little better as I have my first six month appointment next Friday and I have been dreading it, they never seem to be interested in how you feel so long as you answer there questions.It has been the worse six months ever so painful.Look forward to reading more . good luck.

[Sher78 in reply to Shanti]

Thanks Shanti. As some1 said on my last blog, u have 2 do u're bit 2 MAKE them listen by whichever way. If u feel u haven't been heard or that they haven't taken notice, do not move u're ar*e from that seat, even if they tell u u're time is up. Be polite & keep u're composure & just say "Right, I have listened 2 u & taken on board what YOU have had 2 say, now u r going 2 listen 2 ME & take on board what I have 2 say. I feel.........." or words 2 that effect. Once they realise that u won't just nod & go on u're merry way & that u aint a push over, r going 2 b stubborn & stand u're ground no matter what, HOPEFULLY they will realise that u won't b fobbed off by ANY1. I think I'm gonna work on a little strategy or some guidelines that MAY help if people r having problems with their rheumy's/GP's etc......

Find u're inner assertive bitch & unleash her ;0) All the best honey

[Purpletop in reply to Sher78]

I second all that, well said, Sher.

[uzi41]

How funny, Cos i am all ready for my appointment in 2 weeks to go in al guns blazin..... Good that it all turned out ok for u.....xxxx

[Sher78 in reply to uzi41]

Thanks uzi, still quite unsure if it actually was REAL or 1 of my 'Episodes' lol x

[uzi41]

U did well..and made us all laugh..xxx

[Sher78 in reply to uzi41]

Thanks my lovely. Here's hoping u get a decent outcome too! Now just 2 tackle this bloody ESA medical x

[uzi41]

Xxx goodluck..xxx

[Sher78 in reply to uzi41]

cheers my lovely, but after reading about people's experiences on here I aint very hopeful. The odd thing is it's the first 1 they've asked me 2 attend & I've been on it almost 2 years. A medics word should b good enough but there u go x

[skj619]

im glad the appointment went well, good luck with the test results x

[Sher78 in reply to skj619]

Thanks skj619

[pattismith]

Unfortunately l have only had bad experiences with Rheumatologists. I consider myself to be polite but have learnt to speak up for myself over the last 2 years, backed by educating myself on my illness. i had suffered for years with joint pain and after 4 years of using anti-inflammatories, my GP referred me to a Rheumy.He just told me to carry on with anti-inflammatories. 2 yrs later tried another drug (which l now is prescribed for Lupus), l had an allergic reaction to it and stopped taking it, nothing else was suggested. Then at a routine check-up with Rumey, there was blood and protein in my urine, he then suggested testing me for Lupus but didn't even explain, l had never even heard of it! A week later a letter asking me to go for a scan at Renal outpatients ? scan and more blood tests, followed by an emergency Kidney biopsy, followed by intensive intravenous chemo for 6 months and high dosage of steroids! Fortunately l have an amazing renal Consultant and 2 years on am responding to treatment, but permanent damage to Kidneys -if only tested sooner Now after 2 visits to new Rheumatologist am disappointed to find he is also incompetent and l have no alternative than to make a formal complaint about his manner and lack of knowledge. Glad to hear that you stand up for yourself. I don't like to complain , but enough is enough!

[Sher78 in reply to pattismith]

Sorry 2 hear u have had such a bad experience, I really do feel 4 u.

I've always been a feisty 1 but never really had 2 b until a few years ago when practically the whole team of medics that looked after me changed (mainly through retirement). Of course it all coincided with me having a massive flare so obviously I was very apprehensive & starting 2 worry & I was just being placated of fobbed off all the time. Luckily, most of the team started listening when they saw how bad things were getting but my rheumy (who was newly qualified) was having none of it & was saying I was being an over-emotional, over-dramatic woman. I'm SO glad he said that as it was the push I needed 2 find my fire & tell him exactly what I thought of his care (I cannot stand anybody thinking they have superiority over any1 else). Needless 2 say it didn't go down 2 well & I seriously thought I'd b removed from the patient list but I think the fact that I actually knew quite a bit about lupus & "debated" in my argument rather than just shouting every obscenity I knew at him then kung-fu kicking him in the head, worked in my favour.

Ok, we don't c eye 2 eye & probably never will & there have been many more arguments with him since, but things r getting better & I think there is a willingness 2 listen & respect from both sides now.

I would urge every single person 2 learn as much as they possibly can about how lupus affects them personally & their options etc

Unfortunately, although there is more awareness of lupus now, it is still very misunderstood.

It is a very hard condition 2 CORRECTLY diagnose & there isn't a test that will tell u 100% whether or not u have lupus (diagnosis is based on a meeting a certain criteria of blood results & symptoms). Don't get me wrong, I am not excusing anything but there is a massive need 4 more SPECIALISTS in lupus who we all have access 2. A Rheumy will generally only know so much but at the end of the day, until medics start listening 2 us & realising we r not all complete buffoons despite that fact that we r not medical professionals. Maybe when this happens we will all learn something from each other (patients & medics alike) & b able 2 get a better grip on this disease.

Wishing u all the best & lots of strength x

[angus50]

Yes I am inclined to agree with all other comments you certainly made me smile. thanks.

[jayniey]

Sweetkin, I do love u. I've had this experience myself. Leaves you completely gobsmacked and braindead, doesn't it? He only wanted a quick grab at a bit of fruitcake!!!

Love Jane. XXXX

[Sher78 in reply to jayniey]

U make me crack up honey! x

[jayniey in reply to Sher78]

U2! I'm setting up a nutters club 4 the likes of us. I've proposed u 2b chairnut. We've got 1 wanting 2b a nutter already.

I've bin trying to sell my SLE n I've even offered the pregabalin withdrawal as a free added bonus. No takers yet, mind u if they haggle, they could have both for zilch. I'm good like that. Can't understand why no1 wants them, I thought they'd bite my hands off for the bargain of the month. Keep well sweetkin. Long live pooch n bunnywunny!

Love u know who. XXXX

[Sher78 in reply to jayniey]

Lol! U're handling things all wrong, u need 2 offer them at AUCTION or put them on Ebay. Some people will bid 4 ANYTHING!!!!!!!

I will also throw in the possibility of a broken toe 2 u're already fantastic items. U never know, it MAY swing it x

[jayniey in reply to Sher78]

Reckon u could b right, sounds good 2 me, I'll buy it! J xxx