[annie1971]

evening all

ive not posted for a while but frequently dip in and out of forum. I wondered if i could ask, does anyone know of a good rhumatologist in west surrey or would i able to get a referral to guys even though i dont live in london. Can the gp refuse if i ask him to refer me there. My diagnosis seems to be primary sjogrens syndrome (at the moment) but i am still being frequently tested for lupus.

many thanks annie

 

[Smile Of Life]

Hello Annie,
I was being treated at St Peters in Chertsey. Two rheumatologists there (Irani and Patel) didn't seem to know much about lupus and/or made lots of mistakes with me. The lupus expert there (Dr. Hughes) was so busy I decided not to suffer his waiting times, but you could try him. I also saw a private guy who was hopeless.
I asked my GP to refer me to a London NHS clinic. She gave me a list of 5 to choose from. I picked St Thomas. Once seen the first couple of times the doctor sees you annually as they are so busy and you see a clinical nurse every few months. But they know their lupus there!
If your GP won't refer you, then change GP. It's that easy.
St Thomas gave me a drug I desperately needed (methotrexate) and it's working very well. The rheumy at St Peters I saw just before I went to St Thomas wanted to put me on another drug that wasn't suitable!
So change! Good luck
Duncan

 

[Clare.T]

Hello Annie

I know that you are entitled to a referral to a London Hospital but sometimes there's the question of your trust being willing to pay for it when you're not in a London Borough. The Louise Coote NHS Lupus Unit is at St Thomas' not Guys. I see Dr D Cruz there every 15 months but it keeps getting longer as my needs are virtually nil other than a thorough annual check up that my GP can't do.

The best arrangement is to have a good local rheumy who will work with St Thomas', just in case you need expert advice quickly.

I agree too that the money is well spent on going privately to The London Lupus Centre for a one off assessment and therapy suggestions.

Good Luck
Clare

 

[x_claire_x]

Rheumatologist

HI Annie, just a quick note to say I was diagnosed in Guildford last year after five months of joint pains, autoimmune screening etc by Consultant Rheumatololgist Dr. Li. I also went to the Lupus Centre, London Bridge Hospital to get a second opinion which concurred with Dr. Li. Indeed I have found him to be most helpful and knowledgeable and very importantly careful of all the potential implications of this disease. He works out of Royal Surrey and has been in post for about eighteen months I think since the previous Rheumies retired. I have decided to not bother with the London Centre at the moment because all my care needs are being met... he also has a private practice with a consultation around 150. It is a very personal thing finding the right Consultant for you, but I hope this may help you.

Best wishes, Claire

 

[annie1971]

hi everyone

firstly many thanks for your really helpful replies which has given me lots of things to think about. I am currently living in guildford and i have just been transferred to dr li from Dr Banji (now left) so i will see how he is when i have an appt in a few months. I was interested to see that he was found to be good and this is reassuring as it has been a battle to get anyone to take me seriously with this illness although im sure many of you have been through this. I am also considering paying for a private consultation just to gain 2nd opionion advice on some issues i am having.

I just wondered if anyone could offer some more advice. I have some breathing issues and have had a clear x ray. In spite of this i am aware that lung inflammation and other things arent always picked up on x rays and my breathing problems are worrying me somewhat. The rheumatologist doesnt seem too concerned and said due to my short stature it wasnt worth doing pulmonary tests as they were bound to be abnormal compared to an average height person (i understand this) but where does this leave me? I would like him to do a ct scan to put my mind at rest but he was reluctant to do this ( i dont think he felt it necessary and said it was more radioactive). I dont want to seem pushy but if there is some issues going on with my lungs i would rather catch them early and treat it rather than finding out in years ahead that it has got much worse.

sorry for rambling but does anyone have any thoughts??

babycakes x

 

[x_claire_x]

Hello again

HI Annie.. just to say when I flared at RSCH last Nov Dr. Li ordered a VQ lung (radiation) test to ensure my lungs hadn't been damaged... he did say a CT scan could be done if that showed any query... which it didn't. I am not sure if I would have had to have the CT on private health; he has also sent me for a variety of other organ scans following the flare on medical insurance and most recently a bone density scan as my Vit D is a bit low and I have been coming down off steroids since the flare. I am 5ft 2inches on tiptoe so of short stature too, I would be furious if someone dismissed my height as a reason for not giving me good care!!!! Little people can be fierce
Dr. Li does have a busy brain so you do need to emphasis what your exact health issues are... so make a note before you see him.. I have found him to be thorough though and always seems a step ahead of me!!
I hope you do find him helpful but think a second opinion is always good.
Take care and all the best.
XClaire

 

[Pink Pearl]

Hi Annie,
I have dealt with lung issues longer than I have been dx with sle. I would be FURIOUS if I was told that my height, 5' 1", would make testing insignificant. That is just the doctor being a jerk. Plain and simple.....dump him faster than a hot skillet. I have a peak flow meter and nebulizer which I use here at home. The peak flow meter is a guide if I am feel that I am not getting as much air as I need.

Lupus can cause a lot of problems with lung function. If caught early, it can leave less damage than if it is ignored. That this person is discounting you is not allowable. Personally, I would be out the door faster than he could turn around. I do not tolerate that treatment from doctors. Just because they have an MD degree, does NOT mean they can walk on water and keep their feet
dry!

For what it is worth, my pulmonologist was the one who diagnosed me with lupus. The first rheumatologist brushed me off, but my pulm doc has been rock of support for the last 20 years. I truly doubt I would be here were it not for the excellent care I got from him. When I got my first copy of the Dubois lupus book, I loaned it to him. I figured it was in my best interest to at least provide him with the best guiding I could. He is SO up to speed, much more so than many rheumy's are. I'm not the only sle person I know who thinks so. He kept my book for a couple years before he was done with it.
Sally

 

[annie1971]

hi ladies

thanks again for your reply, i spoke to the rhumatologist i am assigned to at the rsch (she is working under the supervision of Dr li) and she said my x rays were completely clear. She said they could do a series of pulmonary tests but to warn me they may say abnormal due to being only 4ft 6inch and says they may be normal for me but wouldnt necessarily mean anything was wrong. she did say they were willing to do it so that they had a starting block unless there were any problems in the future. I said that i was still concerned and would like a ct scan unless Dr li could catagorically say there was nothing wrong with my lungs and she said she would speak to him and get back to me. I will let you all know how i get on

thanks again for the support


annie x

 

[Pink Pearl]

Hi Annie,
I think more than a ct scan you would do well to go thru pulmonary function testing (pft). This tests the amount of oxygen saturation in your lungs, the ability of your lungs to properly infuse your blood with oxygen and the CO2 tradeoff.

There is a condition in lupus which affects lungs known as interstitial lung disease. This is a problem with scar tissue in the lungs not able to do the O2/CO2 trade. This is not visible on ct/mri, but is a definite problem for lupus. To my knowledge, the best/only way to find this out is to do pft's. You need a pulmonologist to order these in order to be able to properly interpret the numbers. These are based on your size, weight, and lung status. Generally these are done in larger off site centers or in hospitals. They are not easy, but are often needed to figure out what exactly is causing your lung problems.

These are NOT asthma....do not show as an asthmatic problem. You would do well to investigate the pft and find out if this is your problem. I also have asthma as well as ILD, so use asthma type meds and treatments also.
Sally

 

[x_claire_x]

request

HI Annie, on your next appointment it might be an idea to ring them up ahead and request that you are put on Dr. Li's list rather than his registrars. If you have issues that are not settled at the moment it would be better to go to the top man. At least they are willing to investigate your lungs further, I think it a good idea to get a baseline observation so they can monitor you, especially if you are small and they think that could be different for you. But to be honest they should take care of your lungs and find out what your normal is...I am sure a short flautist would have better lung capacity than a tall slouch potato!!!! :rotfl:
The alternative is to see him privately for a half hour or so uninterrupted chat through.. he is about £150 and works out of Mount Alvernia. I wish you all the best.
XClaire

 

[onetay]

Annie,
I am from the United States but here a gp can refer you to just about anyone, not sure if it works the same way where you are at. I hope you find a good rhuemy as they are hard to come by no matter where you are at. Keep positive thoughts and hope you are feeling well.