Go home and have a baby !

[MadMatilda]

At 25 I started with joint pain. First Rheumy I saw asked me how many children I had given birth to. (None, as I have antiphosolipid syndrome and couldn't get full term). He told me there was nothing wrong with me and to go home and have a baby to "take my mind off my imaginary illnesses". He then wrote to my GP and said I needed psychiatric treatement as any woman who didnt have children was abnormal. He also suggested that perhaps I was using illegal drugs as my skin was pale (I have auburn hair so obviously have pale skin) I got an apology from the hopsital who said it was "cultural" as in his culture it is abnormal for a woman not to have children. A 2nd (female) Rheumy then diagnosed arthritis and I was fine for several years under this rheumy however, I then got moved to another clinic list and a 3rd (male) rheumy. He has said 2nd rheumy didn't know what she was talking about, nothing wrong with me, chucked me off his list completely, so I now have no rheumy at all. He did admit I need new knees, and hips, but that it was only OA. (I am under 40 years of age) Tests also show positive ANA, lupus/malar rash, photosensetive rash, antiphosolipid syndrome, raynauds. My GP, the ortheopeadic consultant and the dermatologist are convinced it is Lupus, but I just don't know where to go from here, and my GP wants me to see a consultant who specialises in Lupus. Can anyone recommend a consultant. I am so scared of seeing another male dr who will label me a nutter, despite test results. Why is it that some male doctors just assume we females are fluffy brained nutters and ignore our obvious physical symptoms?

[panther50]

I'm so sorry you've had such a terrible experience to date, which part of the country are you in? St Thomas's Lupus website has a list of consultants in different parts of the country with contact numbers.

[steadilymovingforward]

OMG that is unacceptable! I have so many horror stories. So many doctors asked me if it was in my head! I am half asian but I'm born and bred British so I am proud to be British and the equal rights we have here. Nevertheless, my old Doctor (an asian man) must have just seen me as part of his community so thought he could say what he liked to me (I have had many wonderful asain docs too by the way). He asked if I was sexually active (had bowel issues) and when I replied 'no' (single at the time)...he said "good an unmarried asian girl, shouldn't be"!! And people wonder why patients punch Doctors? (joke ) ...I was young and a bit shocked so I never said anything....God help him if he said it now

Maybe try private if you can?..people are really nice when you pay them to be

I really feel for you because it offends me to the core when a man treats me that way.

Do you have any strong/scary female friends you can take for support, the rottweiler type?!

Hope you find someone who treats you with the respect you deserve soon, it will make all the difference.

lots of hugs

xxx

[MadMatilda in reply to steadilymovingforward]

I am sorry to hear you had a similar problem. My GP is Asian and brilliant, and he has no time for the attitude that the first Rheumy showed. I don't know what we would have done without my GP's support. My neighbour is a nurse at the hospital and apparently all the nurses hate the rheumy, he talks to them like dirt, but the management just brush over it. I think you are so right about paying, and I am really considering going down this avenue. x

[steadilymovingforward in reply to MadMatilda]

Yep, my GP is lovely too (Mirza) he treats me with the utmost respect. My current GP was born here whilst my old one wasn't, so brought his cultural ideas with him to his practice. I think it's fantastic that we have expertise from all over the world but I think the NHS need to ensure that practitioners from abroad understand the culture here, I also think the NHS need to work on some of our home grown staff too as some people who have no cultural excuses still seem to be so unaware of how their behaviour affects others.

I also find sometimes older doctors can be a bit worse (only sometimes!) and was wondering if maybe they become a bit jaded when they've done the job so long?!

Glad you're thinking about the private route, let me know how it goes

xx

[lillyanne]

Oh my gosh this is awful! I was labelled as a 'stressed female' too but what this doc has said to you is disgusting. I don't know an answer to your question as I could not really recommend my own rheumy unfortunately but I just wanted to say keep your chin up and maybe discuss with your G.P or dermatologist about what happened with the rheumatologist and do they have any suggestions as to what you can do because you are not prepared to suffer any more.

Good luck and lots of hugs xxxxxxxxxx

[MadMatilda]

Many thanks for all your replies. It helps just to know that there are other people out there who have also been wrongly labelled "stressed females" ! !

[misty14 in reply to MadMatilda]

I am so shocked you were treated so badly by a Rheumy, there is no excuse for his behaviour and he shouldn't be practising. I do hope you find a better one through your GP and you get the help you need. Good Luck.xx

[lupienat]

Make a formal complaint!!! If we dont report this awful so called bedside manner which is blatant abuse then they will be allowed to continue. Call the london lupus hospital, private but amazing and I can asure you no one there will ever be so rude. At least you will get a polite, honest, experienced knowledgeable medical opinion. By the way Prof Hughes is also an expert in aps/hughes syndrome as he was the doctor who discovered it. App 190.00 for initial app. They will only ask you to return if you have to and might be able to direct you to to a rheumatologist who knows what they are talking about. Sorry you have had such awful experiences big hugs xxx

[MadMatilda]

I did put in a complaint and although the chief executive wrote and said I had not received the standard of care I deserved, the customer services people at the hospital were horrible with me. Basically, they have said that it is up to my GP to get me another Rheumy at another hospital and tough. I really can't face seeing another idiot rheumatologist. I've had a miscarriage, have raynauds, antiphospolipid syndrome, malar and photosensetive rash, always (weakly) positive ANA, kidney function reduction and discoid lupus and widespread arthritis and still I can't get a diagnosis of systemic Lupus. He said because my ANA was always weakly positive that there was no way I could have SLE and that the ANA must be very high before a diagnosis of SLE can be made. He would nearly wet himself when his private patients turned up at the hopsital and he was as all over them. They were all elderly women walking in high heels without any trouble and carrying their sticks (and not actually leaning on them), yet he treated me, an NHS patient, like dirt. I'm not even middle aged yet but I feel terribly old. There seems to be something widespread around the country about Rheumatology Consultants not wanting to diagnose Lupus or RA and brushing patients off. My GP practice is convinced its due to cash xx

[emilyb]

Really sorry to hear that you have had such a terrible time.... I don't blame you for being very angry & dis-heartened. If you live anywhere near to Manchester there is a lovely (Lupus team) at Manchester Royal and the consultants name is Dr Gorodigan .... I drive over from Liverpool and have done for 19 years, rather than attending a hospital closer to home.

Good luck & I hope you manage to get treated with the respect you deserve!

[MadMatilda in reply to emilyb]

I've had pneumonia for over a month and the A&E department (when I was admitted) said it was definitely conected with untreated lupus and advised me to seek another Rhemuatologist. So my GP has actually written to a Lupus specialist in the Liverpool area asking for advise and listing all my symptoms. I am in Chorley area (near Preston) so that won't be too far to travel. I am just waiting now, hoping that I get some help from this new consultant. I don't know what I would do without such a brilliant GP - he's the only one who helps me.

[emilyb]

I have lived in Liverpool all of my life & havent heard of any Lupus specialists here, I've heard of hopitals taking an "interest in Lupus" but not actually specialising and I will not attend a hospital if they do not have a 'Specialist Lupus Clinic' so if here is then it is new to me and I do try to keep my ear to the ground... That is why I continue to drive over to Manchester and will NOT transfer to Liverpool (If I did not have Manchester I would go to London St Thomas's). Manchester also has a clinic for 'children with lupus'. . During the years I have been attending Manchester they have been very good for me & a relative of mine who has been very ill (I suspect Lupus) has been passed 'from pillar to post', she chooses to stay in the Liverpool Widnes, Warrington area !! I requested my GP make the referral to Manchester many years back.

I wish you well and hope you manage to get with a team that will be good for you and that you feel comfortable with :))

[emilyb]

P.S. Manchester used to have a lupus specialist named Mr Berstein who was very well respected but he retired a xouple of years back and I was a little apprehensive about who would take over from him, but the consultant Dr Gorodigan .... She is lovely and only 3 weeks back I met her new registrar and she was lovely, made me fel as if I had confidence in "her". :)))

[MadMatilda]

The Doctor is Prof Moot, apparently he has a special interest in Systemic autoimmune diseases. My GP says he has heard very good things about him, but having read your post I which I had known about Manchester and the fact the consultant is female. I will just have to keep my fingers crossed !

[mariearmstrong]

my condolences. sometimes it easier to go home and just deal with the flare up than face another retarded doctor wasting tax dollars. stay in the game of finding a doctor, you have a GP in your corner. it will all work out. in the meantime, it sounds like you are able to document your health as it weaves its way thru autoimmune symptoms. keep that up. in the mean time utilize what you've got. you've got the power to get rid of unnecessary stress and grievances in your life, build up a diet that works for you, a light exercise routine that works for you, meditate, yoga. Lupus, despite its ugliness, can actually be seen as a life changer for the better. lupus loves misery and negative lives. change anything in those areas, and make yourself number one and lets hope that first doctor gets struck 'dumb' and can no longer practice medicine - sounded like a real winner lol! in time you will see patterns with sensitivities to food, and other chemicals. keep those documented as well. its doable, the hardest part is getting yourself a good 'team' of experts