[mazie33]

mum has been ill with lupus for years it took a long time for them to diagnose it and brfore they did they had gone through everything and told her it was in her head and she was making it up, she tried to take her life she couldnt cope with not being in control

by accident they diagnosed her recently she was advised to go to st thomas for her skin as they are the best she traveled a long way to get there and was totally exhasuted she saw a dr lady who promptly told her she didnt have lupus and her skin was ok and why was she even there we told the dr all the past history and the diagnosis from sothampton general she said " a blood test wil tell you either you have it or dont bloods are 100% acurate and if its negative i cant see you which i suspect it will be "now even i know that bloods are not everthing she asked my mum why she was on so many pain killes mum told her about all the pain she said " i have 2000 paitents and not one of them suffers pain that cant be cured with paracetomal.
my mum cried all the way home she feel like shes right back at the beiging again she has been so ill since she returned home and now she wont take her meds she says if she hasnt got it she doesnt need them please help

 

[Clare.T]

Welcome to the forum Tracey but I am so sorry your mum had this dreadful experience ! As you and your mum know this doctor was talking rubbish - I feel outraged on her behalf.
Can she get back to Southampton and tell them what happened ? It's a bit puzzling because Southampton has a well known Lupus treatment centre, headed by a St Thomas' trained doctor who works at the private London Lupus Centre along with Dr Hughes. I think I read that he is Dr Hughes son- in- law.

We can't say anything bad about doctors here * by name that is *but I have PMed you in the hope you feel able to tell me who it was. We have had several comparable reports of very bad consultations, so it becomes a matter of concern. I myself had a disagreeable informal encounter with a particular St Thomas doctor but luckily I was assigned another when I registered there for whom I have nothing but praise. It has a lot to do with how people are treated whatever the medical opinion of the case is.

Many of us here know the despair that sets in when we encounter these insuperable obstacles to diagnosis and better health, worse still when you are so badly treated by doctors. Often people need to regroup and summon up new strength and determination to carry on.

Did your mum have a skin biopsy done that proved she has lupus ? If not that is a definite line to pursue. If it was done some time ago then it would be worth redoing it or having the findings examined by another pathologist preferably a dermatopathologist.

Mostly lupus skin responds to the same treatments as for systemic disease although in some case specialised treatment is needed with drugs that aren't in use for systemic disease.
Certainly your mum needs to let her GP know what's happened. Many of us take anti depressants because depression can be a symptom of lupus, caused by the lupus, as well as a reaction to the difficulties of living with the disease.


Please let your mum know that there is lots of sympathy and understanding here. We will do all we can to help you help her so please keep in touch and let us know how we can help you further. She is lucky to have you caring about her

Bye for now
Clare

 

[mazie33]

reply

clare can you tell me how to speak to you privately i will tell you who and explain

 

[Clare.T]

Hi again Tracey

If you look at the top right of a page under Welcome(yourname), which is under Forum/Gallery Guidelines, you see Private Messages:in blue and underlined. You should now see Unread 1. Click on Private Messages to read then use the reply option to reply


Clare

 

[greenhaggis]

Hi Tracey,

My heart goes out to your Mum and you - this is really stress that she does not need (you too)!

Whether or not your Mum has a diagnoses of Lupus she does have pain and that still needs to be treated! I don't know about your Mum but when I have more pain I feel more stressed with life in general, get grumpy and feel really fed up with life. If pain medication can help standard of life then in my opinion thats what you take to help.

Please keep reminding her that the doctor is wrong regarding Paracetamol. I suffer with many pains and it does not help at all. I'm also one of the few that even anti-inflammitories don't help as well (make me vomit and still have pain). At present I have no effective pain medication, but I wish I did!

Can you call your Mum's last consultant's secretary and explain things on her behalf i.e. how bad the appointment was. Perhaps they can suggest something else or refer her back to them. Perhaps even a call to whatever department it is that deals with patient complaints at St Thomas's would help sort out your Mum's bad consultation and even give her another appointment with someone else.

I never been to St Thomas's but I do know of two Consultants that have worked there as they are now located at the hospital I attend. I have been under a Rhumis care then discharged and now see the other one (an Immunologist) - both are not that great when it comes to Lupus patient care!

It probably would do you good to have a private rant with Clare about the bad consultant. Sometimes it clears the head to name and shame and rant even if it is in private.

Any way, please take care of yourself and best wishes to your Mum and I do hope you get things sorted out soon!

Love Lesley

 

[mazie33]

thanks

hi im zoe by the way soory traceys daughter
thanks for the private chat clare
as you asked my mum take steroids, Plaquenil,and antidepressants also morphine for the pain the pain killers are used because she cant take anti-inflammitories due to an allergy to them plus repeat stomach ulcers
the pain is serve and they think as my nan has ms that she possible has this to.

her skin is deppressing her the most thats why we took the decission to go to st thomas which was very difficult for her as she doent go out anymore further than the dr or the local hospital this is why this is such a traggergy she has been set back years to the begining when they didnt belive her i dont know what to do for the best
thanks for you replys

 

[LolaLola]

Hi Zoe,
I have mailed your Mum privately and we have been talking. She is not alone, my Daughter had a very bad appointment with that person and I made a huge fuss for her to see the same Consultant as I do.

I am sorry your Mum had to put up with this. I live near you (newport) and know how hard the journey to London is.
x Lola

 

[Clare.T]

Hello Zoe

It would be good if you could post your questions on Medications forum with a title like " Medicines for Skin Lupus? ". That way the info is available to all and you might get additional comments and suggestions thus benefiting from other people's experiences and knowledge, not just my own
If the local rheumy realises he doesn't know enough he should be more than willing to refer out again. Not many doctors have enough experience even if they are knowledgable and willing, to treat the more complicated cases. Take heart and live in hope !
Hugs
Clare

 

[Katharine]

Hello Zoe,

All I can say is to second what everyone else has said. That is an absoultely awful experience and so so untrue!!

I would never have been diagnosed if I had to rely on bloods as very little showed up in the standard screening tests which were run other than a slightly raised level of inflammation.

I was diagnosed through a skin biopsy even though I have no skin problems other than an occasional malar rash.

After having had that biospy the rhuemy dug deeper wit more specific blood tests and started to find that thing weren't quite as they should be at all. Unfortunately some rheumies do believe that bloods are everything which is a great pity as clinical diagnosis is extremely important too.

As for paracetamol!! Well, for me, to be honest smarties have as much effect and I find the pleasure of stuffing my face with chocolate gives me far more benefit!

On my bad days I take extra NSAIDS as they are the only thing that ease extra pain for me.

sorry, I can't help more but I would definitely go back to Southampton and not mince my words over such appalling treatment! They need to know if their patients are being upset in this way.

hugs to your Mum,
Katharine

 

[Lily]

Hi Tracey,

I hope you are able to persuade your Mum to address her concerns with Southampton and to get the treatment she deserves.

I just wanted to comment on one thing the Dermy at St. Thommies said about the bloods being negative...........if she meant negative now then they can turn negative from the use of Prednisone and also the Plaquenil. It doesn't mean she is free of symptoms, just that it made her ANA go negative (and that happens to many here). So it was a silly statement, from someone who sounds very ill-informed but then we already knew that didnt we

Please send my best regards to your Mum and my love and continued support :hugbetter:

love
Lily

 

[Clare.T]

suffers pain that cant be cured with paracetomal

That simply isn't true in general as a cursory read of this forum shows. It would be interesting to know how she manages lupus so that it is true of her patients.
Clare