At a loss. I don't know who we are supposed to turn to.....

[purple-lou]

I saw my rheumatologist on Friday. I gave him an A4 piece of paper with all my new symptoms on. He didn't even have the decency to read it. I told him that I'm not coping well with lupus. I told him that the placquenil isn't helping. (I'm worse instead of better). He wasn't interested at all. Why doesn't anyone listen? Who do we turn to for help? I rang my GP surgery this morning and there aren't any appointments this week or next. I was told to go to the sit and wait surgery. I told them that I'm too ill to do that. I could scream if I had the energy!! My rheumatologist told me to go private! I wish I could afford to. Where does it end? I've been waiting for 7 weeks to have an emergency appointment with a neurologist! And 5 weeks for an emergency mri, no news on either.

What does anyone else do in this situation?

Please help.....

Louise xxxxx

[purple-lou]

I've been on the placquenil for 5 months now and I'm definitely worse. I can hardly stand.

[Sher78]

Personally, I don't give them any option, other than 2 listen. Even an emergency MRI & neuro app can take a while but if it was me, I'd ring them. As 4 the GP, ask if they have 'open surgery' (where u ring on the morning 2 get an appointment that day), explain 2 the receptionist that's it's a matter of urgency u c some1, b polite but firm explaining that u r very worried 4 u're physical, emotional & mental health & it's imperative u c or speak 2 a gp (do not explain why u want 2 c the doc as it's bugger all 2 do with them, they r not doctors therefore have no right 2 ask about u're health). As 4 u're Rheumy, I'm disgusted that he didn't even look at u're list. If u don't feel u can b firm with him, take some1 with u who CAN b, INSIST that he reads/listens 2 u're concerns & if he STILL doesn't listen, tell him u wish 2 c another rheumatologist, u find him very un co-operative & will b bringing these concerns up with some1 higher up. I know it sound a bit harsh & I understand u may not b feeling very assertive or whatever but I have had similar experience. In actual fact I believe I called my Rheumy an ignorant, rude little man & just because he was a 'Consultant' he had no right 2 b rude & dismissive 2 me. It could've gone either way but I he took it on board & has been much more receptive since as he knows I'm not stupid & am not going 2 stand there & let him fob me off. U deserve answers purple & better care. I'm rooting 4 u ;0)

[purple-lou in reply to Sher78]

I spoke to a GP and he said that there's nothing he can do! My own gp is on holiday.

We only have a sit and wait surgery in a morning. Even telling him that my heart is racing and I'm having chest pain didn't make any difference.

I give up. Xxx

[Sher78 in reply to purple-lou]

oh lou, how awful 4 u! That's totally irresponsible of u're GP, if u mention chest pain they're supposed 2 c u as a matter of urgency! It's pathetic how some places r run. Makes me wonder why any1 bothers 2 pay National Insurance. Speak 2 u're practice manager or write a letter 2 u're local MP, this is absolutely disgusting. If u were a smack head, u'd b given top priority! God this really makes my blood boil :0( Is it worth trying A&E? x

[purple-lou in reply to Sher78]

My partner thinks I should go to A +E.

I can't see what good would come out of it though.

My energy levels are so low that just breathing seems hard work.

I think we get so used to being ill that we don't realise exactly how poorly we are. Xx

[mstr]

Hi Louise, Sher has said it all so that is good I'm so sad for you and in a similar situation myself .......just waiting for concrete diagnosis rather than UCTD and it's so frustrating as I have had more illness in a 10 week period - whereas before this rarely visited the GP. I'm due a rheumy appointment too this Thursday pm and am already feeling a little nervous about it. Like you Louise I have word processed a list of ailments since last appt in August including, UTI (white cell casts present), proximal and distal weakness diagnosed by Neuro due to underlying CTD condition and physiotherapy because of the weakness, bronchites that took two weeks to clear, flare ups whilst still taking placquenil (less intense but still there), sacrilites (inflamation of that joint and on diclofenac), plus the usual joints achy/stiffness etc - and an ANA present 5 times. This time I am attending with a view that I will not be any further forward (how sad is that) as I would rather not build up any expectations( I totally understand what you are saying Louise. I doubted myself on and off this year thinking maybe this is all in my mind whereas now I know for sure there is definitely something going on. I started out with a bit more 'spirit' in me and more able to challenge now I feel I am becoming more accepting of what I'm just being told and also more submissive. Occasionally I have thoughts of "It's my body, why don't I know what's happening ....they must have an idea".

Louise I hope you take Sher's advice above and I too like your spirit Sher and need to get a bit of that back xx

[Sher78 in reply to mstr]

Thanks mstr. Trust u're instinct ALWAYS!

I had been going 2 c my GP every week (despite previously hardly ever going there in my life!) with some new symptom each time. This went on 4 over a year. " days b4 my 16th birthday, I spent 10 hours in A&E having blood tests, urine tests, stool samples taken, xrays, ultrasounds, MRI's, EEG's, ECG's, being poked in every hole I had, u name it, they did it. They sent me home after 10 bloody hours, despite the fact my ankles were so swollen, I could hardly breath or move & looked like shite, saying it was all 'Psychosomatic'. 2 days later, I had a massive stroke. Of course, this started the ball rolling & eventually I was diagnosed with lupus, APS, MCT & all that malarkey. The point is, I KNEW something was up & maybe if that GP had listened 2 me instead of fobbing me off or A&E had admitted 2 a ward or something, things could have been different. Push, push & push as hard as u bloodywell can, someone WILL eventually listen x

[mstr]

Thank you Sher, you are a brick. I don;t know how am nearly 50 I have gone from always being to healthy (only in hospital for pregnancies and rarely at GP's to the past 1.5 year like this. Ironically with taking the diclonfenac this week and last my back (sacroliac joint) is easing in time for my rheumy appointment and I will probably look like a picture of health....despite being so stiff and hardly able to walk last Monday. I'm glad you said trust your instincts and you seemed to have a hell of a time and seem to remain upbeat. I do try to remain upbeat but every once in a while I have a day where I feel beaten. The plan is tomorrow to have no expectations and that way I cannot be disappointed. Thanks for your post, it's the posts from people that have been there that are so inspiring. Hope you have a good day xx

[Sher78 in reply to mstr]

my pleasure, I've been called a few things in my time but never a brick lol, thank u. I think that's 1 of the biggest problems with lupus, it's not always visible. I always pee myself with laughter when some1 says 'u look tired, maybe u should get a few early nites' lol! if only that WAS the solution! My head is clear again 2day (that's day 3 now!) so that make a big difference 2 my day :0) Maybe my true calling is 2 travel 2 various hospitals etc & kick arse ;0) x

[mstr in reply to Sher78]

Lol.....wouldn't that be fab x

[Sher78]

& as u very well know, I wasn't so upbeat the other day :0/ I guess it all depends how we look at things, we can lie down, roll over & let it consume us (which I think we ALL feel like doing sometimes) or just b stubborn enough 2 DEMAND what we so rightfully deserve - a shot at having a decent quality of life but as u so rightly say, sometimes it easier not 2 expect anything, that way we can't b disappointed & only pleasantly surprised when something good happens :0) x

[larissa]

This is disgusting !

Why is it that we have to push so bloody hard ! I d change doctor /rheumy ASAP and in the meantime i'd take my chances and go up A&E!

My gp is lovely but not sure about my rheumy so am going to ask for a referral to St Thomas' .

Good Luck x

[purple-lou in reply to larissa]

My lovely gp is on holiday. I'm waiting to go to Birmingham to see a lupus specialist. It's the waiting that's the hard part. Life goes so slowly when you feel so poorly. We shouldn't have to fight so hard. It's wrong and demoralising. Thanks for your support xxx

[Sher78 in reply to purple-lou]

Sorry 2 hear that Lou, this is why I think it's so important that we get 2 know our illnesses & options as much as possible. I'm sure if I hadn't've opened my mouth a few time 2 various specialists I'd b a lot worse than I am half the time :0/ It's sad that we should have 2 tell them what they're supposed 2 b telling us but sadly, it seems much of the time that's the case x

[vonnyrad]

Purple-lou, if you are too ill to attend the surgery then you are quite within your rights to have a home visit, in fact, you should insist on it, (just make sure you ring early in the morning, better if you can get someone else to ring as you are 'too ill to speak on the phone',) then maybe the docs at your surgery will appreciate that you really are ill.It has taken me over 30 years of GPs and hospitals to realise that if you don't kick up a fuss, you will be over-looked in favour of the loudmouth who thinks their problem is more important than yours.Don't just accept being fobbed off, or you will end up as an emergency admission to A&E, I know, it's happened to me more times than I care to remember.Please do this, even if it means seeing someone who's not your usual doctor.Hope you get sorted soon x

[LucyLocket]

I also really can empathise with your situation - I think that unfortunately the NHS system just expects those who can to go private and the rest of us just to go away and die somewhere quietly: they only want to deal with the cases that are simply a matter of a prescription or straightforward surgery.

I would just add to vonnyrad's comments that I have found from bitter experience that you do have to just get yourself admitted to A&E - especially if you are having chest pain. One of the lovely and many side-effects of this illness is a predisposition to all kinds of things including pulmonary embolism (which is what they thought I had - it wasn't as it happened, just pericarditis - also something common to lupies!). Obviously anything like this needs to be taken seriously. If you admit yourself to A&E and stress the chest pain, then not only will you be whisked through and dealt with properly but your GP surgery will get a big slap for turning you away!!!

Hope you start feeling a bit better soon!

[Looby]

Hi Purple-lou - may I add my voice to all the encouragment you've had above..... Just like them (and you) it makes me SOO frustrated to see how our so-called National Health Service is just not providing the service most folks expect - we all know that it is badly managed, seriously in debt, and mis-usedf by people who have not paid NI contributions - so this is bound to have a knock-on effect for individual patient care. Even so - this does NOT excuse those practitioners who just "fob" ill people off, and do not bother to listen or give helpful advice. GPs are VERY well paid, especially if they do out-of-hours visits - so they should at least attempt to keep up to date with new research and treatments. (A new one at our Surgery hadn't even heard of Lupus!)

When I had an acute reaction to Methotextrate last year (It made both of my legs swell to twice their size, with a burning sensation rather like cellulitis) I went straight to A & E and the SHO there knew immediately what had caused it, as he'd seen similar reactions before.

It does help when you have someone with you, who is "fighting your corner" - especially when you are at your weakest - so hopefully you will get some help soon.