Auto immune disease/ probably lupus
Hi, just wondered if anybody had felt the need to... - LUPUS UK
Yes, after a couple of years with my NHS rheumy, I was not satisfied that he had been proactive enough in trying to get to the root of my problems. I decided I'd only be happy if I sought a second opinion from someone I knew to have a good reputation in the particular issues I was facing. I ended up travelling to London to see Dr Gordon at Kings, who suggested a series of further tests. My rheumy told me they were "sensible ideas", and he was happy to order them through the NHS (which made me wonder why he hadn't already suggested them!). The consultation cost about £200, plus travel etc.
EDIT: I also went private for my initial assessment consultation, purely because the NHS waiting time was too long.
Thank you so much for replying, I think I will look into this as I'm really not happy with the rheumatologist and frankly I'm struggling to get through each day. Did you contact direct or did you need a referral letter? x
On both occasions I already had a referral - the first becasue I was on the waiting list for rheumatology, the second because I was already under the c/o a rheumatologist. My rheumy was absolutely fine about my seeking support from the London specialist, and I think most rheumys don't take it amiss if you say you just want another perspective. One thing that has been very helpful through all this has been getting a copy of all my clinical notes. It means I can gather all the relevant review letters, test results etc whenever I need them x
Absolutely yes !
I'm looking into it, thank you. Rheumatologist makes me feel like I'm overeacting so nice to know I'm not the only one who feels it's necessary x
I 100% agree they have no interest very frustrating also the MS doctors are the same
Just to say, unfortunately I remain undiagnosed and there may or may not be something wrong with me. But I went private to a rheumatologist and he was so rude. So paying is no guarantee that they will take you seriously.
That is so true. I went privately for my initial consultation because of the waiting times and I wanted to return to work but was in such a poor state I could not weight bare. The Rheumatologist told me go back to work it would take my mind off things??? My husband remonstrated with him and he said what do you want from me. He replied a diagnosis would be a start. Only then did he agree to test me. A month later I was diagnosed with Lupus.
It seems there are two types of rheumatologist, those that are thorough and those that really don't understand how it affects the day to day living/ coping. I hope you are getting the right help now.
I agree. That was 11 years ago. My experience with the majority of Rheumatologists has been very negative. My Lupus diagnosis has changed so many times first to Bechets, then Lupus, then UCTD, then Fibro and Bechets, then MCTD and Fibro, then Lupus, Bechets and Fibro, then Fibro and “ hysteria”, then UCTD, then MCTD and currently I have had one telephone consultation in 18 months. The Rheumatologist is new and has not seen me. I am off the Hydroxychloroquine because one Rheumatologist doubled my dose and caused macular odema. Absolutely abysmal treatment or lack of. Thankfully other specialisms have been wonderful.
Gosh, you've really been through it. I'm at the start of this and it seems to be a minefield... that's why I don't want to mess about and want to find someone decent from the get go x
Oh Cecilyparsley I can so relate 😢. Mine said “why have you come all the way up here to see me you could have seen someone in your home town “ 🤦♀️. My husband wanted to phone GP only this morning as he’s so inexperienced and doesn’t have a clue . Sending you big hugs . How are you doing at the moment ? Xxx
It is awful isn’t it? Bad enough feeling awful then having your ten minutes with someone who tells you how fortunate you are and that you should lose weight and think positive. I emerge fro.m consultations broken and despairing. t the moment I am not in a good place.The torn tendons and muscle were healing until I had a mammogram and wrenched it again. I have cellulitis tracks coming up my leg again. I have left lung pain which is cutting off my breath and my pelvis is on fire. At least my nose bleeds have stopped now that it has been cauterised three times...my GP blamed them on anxiety 🤬. The more I try and fight the less I am believed. I don’t want to call my GP for help anymore because being patronised just makes me feel worse. Sorry moan over. How are you doing now? Big Cwtches back to you xxx
I think you're entitled to have a moan, never apologise! xx
Oh chick 🐣 my heart goes out to you 😢. You moan as much as you like . It’s criminal how some of them treat patients . The cellulitis must be horrendous 😖 and beyond painful . I wonder sometimes how we keep going. Honestly this forum has been life saver for me as the kindness from lovely people like you comes through the words and posts . It’s not been a good week but feel like I have to try to smile for husband . I know you understand . . You take care angel 👼 xx Ps I hope and pray your pain eases off 🙏
Thank you for your kindness too. It is so hard to smile sometimes isn’t it? I know I get Neil down because there is always something wrong with me. I used to be a smiler, a giggles, I loved to laugh and although I worked hard I made sure we had fun too. Now everyday it is more of the same. I am avoiding friends because the only thing I have to talk about is my trips to hospital or what is on tv. I feel less of a person somehow. I really hope that next week is better for you. This forum is a real life saver, somewhere you do not have to pretend that you are ok. Xxx
You’ve a absolutely hit the nail on the head about the forum . Not having to pretend you’re ok is so liberating 😊. I love the way there is always someone on hand to take care of peoples questions. You mustn’t feel less of a person but I do understand what you mean . If only consultants could spend a day in others shoes they might think twice about the comments they make ❤️❤️❤️
Yes I am sure they would. I do nit think any of us expect miracles or hours of their time but we want to be treated with respect and for them to try their best to help us. The condescension, patronising and dismissive attitudes myself and many have encountered is just not good enough. In any other service it would not be tolerated xxx
I have just finished ready this chain and you both have made me feel so much better and less alone about my conditions so I just wanted to say thank you! It really is so nice to know you’re not alone out there but to actually be able to speak to people who genuinely understand and don’t just pretend to is a refreshing change I only found this page yesterday and I don’t think I’ve left it yet!
I really hope the both of you are feeling better soon and you get the answers you are long over due and deserve, lupus can be so hard to diagnose though I looked back over my symptoms from when they diagnosed me to when they first started and it turned out I’d had lupus from being a very young child it was only through having a dvt and constant join pain in my second pregnancy & post pregnancy that they referred me to a rheumatologist a year after my 2nd child was born but I had 2 years of weekly going to see gps and hospital trips keeping my fingers crossed for you xx
MONEY WELL SPENT for me, seen a private Lupus consultant for years. My GP orders lung function/blood tests etc. ( note these can be v expensive privately ) Works well. 10 Mins with the NHS rhumy, they can’t examine or listen, not their fault no time but of absolutely no worth to me. Good luck!
Thanks for your reply. Yes it was the cost of bloods/xrays that was my concern but I'm even more convinced this is the way to go now.
Hi Poinciana Do you mind me asking how it works with your medication ?
I got diagnosed by private rheumy who said I needed to be under the care of nhs due to future escalation of medication which would need to be managed locally .
Thank you !
Hi TiggywoosMy consultant simply writes to the GP asking them to prescribe the various meds at the levels he recommends. I am on immune suppressant and steroid. The GP arranges 3 monthly blood tests ( I am active on this and make sure this takes place) and they simply keep an eye on levels and would alert me in if an issue. I would then return to see my consultant.
I’ve been dealing with lupus for many years so know how to manage my symptoms. It may take some perseverance on your part to get the parties working together to your advantage but it can be done so don’t give up and if you need to shop around so be it.
Thank you so much for this knowledge .. honestly it’s just what I needed to know . How far away is your consultant from your home town ?