Waste of time appt, rant!!!!

suzygirl

Just back from my rheumy appt. I didn't feel like going as it is always a waste of time,but went obediently. Saw a 'specialist doctor' who when I enquired what it mean't said, it means I work in rheumatology. It went downhill from there.

Showed him the rash on my knees which he decided wasn't a rash :shock: And wanted to see photos of any rashes I have had. I have shown photos on numerous occasions. :roll: He then said my bloods were negative, for antibodies I know have been positive as have seen paperwork.

He decided I now don't have lupus, but signs of a connective tissue disorder, inflammatory arthritis and possible drug induced lupus from the meds they have given me. He then said stop the meds (sulfa) so I asked what would happen when the arthritis got worse, hmmm, ok don't stop the meds. :x

He gave me a blood form and sent me on my way.

I am soooo mad, over 4 years have seen umpteen different doctos all with differing diagnosis, the only ones they agree on is sticky blood, sjorgens and inflammatory arthritis. I never see the same doc twice so each appt is like a new one each time. Symptoms I have had noted are ignored, past bloods are ignored and they only go by what I am exhibiting that day. I am so frustrated.

I feel like stopping all appts, meds and everything, it is all such a complete waste of time. What is the point? Past docs have seen my rashes and the scars from them, the rash on my legs he said wasn't a rash the other docs have said is livedo reticularis. I just want to scream and kick and rage, but that would take energy I don't have.

Sorry to whinge and rant, but I have to let off steam somewhere. It is just ridiculous.

stickywicket

That must have been very frustrating for you, Suzygirl as, indeed, it sounds most of your specialist appointments are. I wish I could be of some use but all the names and technicalities of this rubbish go right over my head – the positives and negatives, the DAS thing etc etc. At least I have a name for mine which, I guess, makes it all simpler all round.

Is it worth having a word with your GP about all this? At the very least he/she would have reports from the various consultations you’ve had and might be able to help you make some sense of them. I’m pretty sure mine would. Alternatively, is there another consultant/hospital you could ask to be referred to? A new broom worked wonders for Hileena.

claircoult

(((hugs)))

I know exactly how you feel, I've been there myself and I know how frustrating and infuriating it is.

I'm afraid I don't have any answers for you but hang in there. If you keep collecting your evidence one day you might just find the right doctor who can put all the pieces together and give you the answer you need.

Clair

diamond

So sorry to hear that you feel let down by the system.This is what happens when you never seem to see same doctor.Same thing happened to me in June. Had to go through all my symptons again with doc never met before.Could hardly walk was told he would arrange joint aspiration and injection in a few weeks.Although he was a nice guy i told him that it was unacceptableand i wanted a referral to ortho. Ten minutes later consultant came in looked at my knees and he got doc to take off fluid and give me a injection.Got my referral was seen 8 weeks later.Ortho surgeonis doing tkr on one knee in november.I just felt i was getting nowhere so for once i stood up for myself,politely of course.The problem seems to be that there is not enough rheumy clinics and appts are like gold.Wish you well .xx

dreamdaisy

I think that all that any patient wants is to be listened to with kindness, to have consistency of treatments and consistency in doctor (hence consistency of opinion). The government seems to think we all sit there checking league tables etc before we select our hospital: I think not, we go where we are sent. The fact that so many of us seem unable to gain any of my first three points is where the system fails. We are always at the mercy of someone's opinion - it's better if we know that someone and they know us. Rocket science it is not.

Take some time out suzygirl and re-group. I am thinking of you. DD

tillytop

Hello Suzy

I am so sorry that you are so upset about your appointment today. I completely understand where you are coming from, having been there myself and, frankly, I think it's unforgiveable (although it seems to be pretty par for the course in the NHS).

Like Sticky, I wonder if there is any possibility of referral to a different hospital where, hopefully, they would start from scratch and take ALL your symptoms into account. I wonder if your hospital has a "generalist" like Hileena's does? Because as has been said here before, the specialists are SO specialised that nobody seems to be able to cope with anyone who has more than one thing going on. If your hospital has a PALS (patient liaison) service, they might be able to advise you.

Meantime, I am thinking of you and sending ((()))s.

Love Tilly xxx

Airwave!

Last time I saw the rheumy she said she knows about 25% of one part of the desease and can have a few guesses about the rest. So, our expectations might not be met with.

Hey ho, it's the w/e, keep smiling.

hileena111

Hi Suzy
I'm sorry about your appointment....its sounds a very frustrating and annoying one.
Like Sticky most of those terms go over my head...I'm sorry.
But I think shes got it when she says talk to your GP and see what he/she can do if anything?

Love
Hileena

suzygirl

Hi all, thanks so much for your replies!! It feels better to have someone who knows the frustration, and it saves me from bending my poor hubby's ear! :oops:

I think I will speak to my gp and see about a referral to another hospital, we have a university and teaching hospital the other side of the city, so will see if it is possible to be referred there.

I have to be honest and accept that part of the problem is mine for not standing up for myself, I just couldn't be bothered. I also should have asked to be referred elsewhere before now, I was just hoping it would sort itself! :oops:

I do appreciate your understanding and support, it is so comforting to know I am not alone. I have to say I am also considering contacting PALS as well. Simply because if no one provides feedback, they can't improve. The depts in the rest of the hospital are excellent. However as someone else noted rheum is very over stretched, so it may be the problem.

Thanks again all, I am off now in search of my favourite form of pain relief, it comes in a glass!

lalla

Hi Suzy so sorry you have had such a frustrating appt. I hope the liquid medication has helped Cheers .I think you will be on a good direction with PALS and a change of hospital. There is no exscuse for how you have been treated my heart goes out to you Take care Hugs Linda

tiggernut

Hi suzygirl,
Sorry to hear about your wasted appointment.
Is there no alternative hospital you could go to. We are all supposed to be able to choose nowadays.
Sounds like today's 'medic' didn't really know much at all.
Fortunately being on the Isle of Wight we only have one rheumatologist and two specialist nurses so we always see the same people. Although sometimes I feel that they are not listening!!
We are getting a new rheumatologist as our one is also Director of something or other in the hospital and only actually works one and a half days a week in rheomatology so as you can imagine appointments are like gold dust.
Anyway chin up and I hope it improves for you soon.
Anita

skezier

Hi Suzy,

Oh flower thats just stupid! They don;t always treat us as more than a number....

Good idea to ask for the referral to the other hospital and i so hope your gp can come up with something to fill in the stop gap.

Leaving you a ((((( ))))) and so many hopes flower cus this just ain't right. Cris who also is leaving a sachet and a door opener for Izzy xx

frogmorton

Hi Suzygirl

That must have been soooo frustrating :sad: I would have been furious if l were you.

Do you go alone to your appointments?? I only ask as it does help to have some back-up and l think they muck you about less if there are two of you

I think that livido stuff can be proven by biopsy so would ask for that to be done...if you have a good Gp maybe he/she can do that bit.

I would totally sympathise with you wanting to try a different hospital and hope you can get that sorted. Maybe a complaint if you want to is a good idea too.

I reckon you might be as difficult to diagnose as me! They give me different names every time l go.....inflammatory, sero-neg palindromic and the rheumatologist calls it RA though my bloods are negative. Sigh :roll:

Hugs to you from me

Love

Toni xx

suzygirl

Thanks guys for your support. Feel rough today, and fed up rather than angry. So it is nice to read your replies, it makes you feel less alone.

Toni, I didnt realise you had diagnosis issues as well. Is it sorted now? How long has it taken to get an answer? Do you see the same rhuemy each time?

Cris, Izzy was through that door like a shot. I am sure she will be back for the sachet later, hope she doesn't cause too much mischief!!! Hope you are ok, and the employers are behaving themselves for you.

Tiggernut, do you go to Southampton for your appts? I have heard they have an excellent rheumy there.


Lalla thanks for your kind words.

I am trying to rest up, but not too much today. I have a coldand terrible back pain. I did something stupid yesterday for someone and paid for it with pain and mega sweats. :roll: Poor hubby, long suffering man deserves a medal. I tend to get rather irritable, :oops: with my limitations. As they say, the spirit is eager, but the flesh is weak. Looking forward to x factor later, I am easily pleased.

stickywicket

suzygirl wrote:

I have to be honest and accept that part of the problem is mine for not standing up for myself, I just couldn't be bothered. I also should have asked to be referred elsewhere before now, I was just hoping it would sort itself!

I think it's a very small part, Suzygirl, but it's the part you can deal with most easily so I think your proposal is a good one. I also think contacting PALS is a good idea.

Sorry you're having a payback day. Maybe a little more liquid pain relief? I'll drink to that.

suzygirl

Maybe a little more liquid pain relief? I'll drink to that

Sounds good to me!!!!

tiggernut

Hi Suzygirl,
No I have my rheumatology appts on the island. It's just that I had my elbow replacement in The General.
None of my replacements have been done here I like to get around lol!
I had my knees and hand done in the RUH in Bath the reason for that was some years ago I was under the Bath Rheumatology dept they came here from the Royal Hospital for rheumatic diseases in Bath (fabulous hospital) evry month .Our rheumy at the time was rubbbish and you could choose him or Bath and having been under him for 10 years and no improvement I thought I'd change my only regret is I hadn't done it sooner. Then they employed the one we have now and frankly I have far more faith in Bath but it's a long way togo in an emergency!
I had my ankle and left elbow replacement in The Nuffield Oxford.
I could go to Southampton or Portsmouth I guess but we are planning on moving to the mainland at some point so I will hang on.
Take care,
Anita.

jenzie06

I know exactly how you feel. I feel like shouting and screaming and crying and have warned my hubbie that I will be kicking the rheumy nurse in the shins so she won't forget me in the future at the next appt.

I have been ignored and have had to fight fight fight to get any response from the department. I feel like if I don't get cross then they don't bother with you. They are over stretched and very busy and I know I have to work with these people but I can't do it on my own.

They are very kind and friendly but not very efficient and I feel totally alone and ignored.

AGHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!

frogmorton

Hi Suzygirl

still don't really know what is wrong with me, but l am at least being treated and feel believed. The downside is l tend to keep fairly quiet...luckily l have a fabulous GP (followed him to his current practise as he was a locum at ours) who helps me out when l am in deep trouble.

Pallindromic, RA, Sero-negative, Inflamatory???? Who knows? :sad:

I think we could start a club of our own there are so many of us

You feeling any better today? and do you have a plan now?

Love

Toni xx

suzygirl

Toni, that is so interesting that you have no 'label' either. I know what you mean about being believed, an interesting point. I have a wide variety of symptoms that appear to be some sort of mixture of a few types of arfur. I suppose once the immune system starts it just goes for anything.

Today I have the pleasure of a mouth full of blisters, it is very painful, I have no idea why. Maybe its the cold or maybe its a reaction to a new lippy I tried. Although I would have thought that would have made them blister where lippy was not all inside my mouth? Oh well, have to take my son to his footie match today. I always enjoy that.

How are you? What treatment are you on? Does it help?

Jenzie, it seems a few of us have frustrating rheumy appts.

Tiggernut, glad you are satisfied with the rheumy dept on the island.

tiggernut

suzygirl wrote:

Tiggernut, glad you are satisfied with the rheumy dept on the island.

I wouldn't say that lol! Most of the time they are okay but sometimes I do feel like nobody is listening!