Please please help

I'm weighting this in tears as I do not know what to do to help my. Daughter this will be along post to give background she is 26 and was diagnosed when she was 8 over the years her automunne test have ranged from strongly positive to negative all though her a a test is always positive she has seen a rheumatologist every 6 mths since childhood in last couple of years her rhemy had not been very good and she was feeling unwell she had a etopic pregnancy and had gone down hill since then consent low grade fever joint pain exhaustion body swelling as she has moved she decided

To get referred to a local rhemy from the outset things didn't look good when he said why are you here why do you think you have something wrong errr because she has been under a rhemy for 18 years ??? He took urine sample that was showing protien ordered bloods her esr was high always is her Cortisl

Was high but her immune test were clear this isn't the first time

Her glomerular filtration rate was low she has just called me today to say she has a letter discharging her saying nothing is wrong I just don't no what to do and can't make sense of last 16 years why she has been treated with strong drugs seen every 6 mths please can anyone suggest where she turns to now do you think writing to pals will help

Just as a footnote I was sent to this rhemy by my GP as I was having rhemy type symptoms and collapsed twice with tachycardia I was in his office 10 mins tops he squeezed my arms hard said I had fibromyalgia no bloods nothing as he was bundling me out of door I tried to tell him that something else was wrong his parting comment was well if there is you have 2 illness

2 weeks later I collapsed again bloods were taken and no it was not lupus but my thyroid was very overactive

11 Replies

  • hi there i couldn't believe what i've just read, that doctor needs a good kick up the rear end and for your daughter i would write to PAL'S and report the stupid doctors for how they have treated you and your daughter, i hope you get sorted out both of you, my heart goes out to you both, please let me know how you get on. Alan

  • Thanks bigalan

    She has made a appointment to see her GP next week hopeful she will be helpful we just feel abounded and. Scared she really is not well at moment can't belive he has just discharged her like that it was even him who found her protien in urine and raised esr

  • hi there you should complain to Pal's because this is shocking, you hear about these things happening years ago but not today. i'm speech less i couldn't believe what i was reading. well hope all goes well for her, but i'd take this future, i would hate to think what if the worse had happened, i can't stand to think about it. take care if there is anything i can help you with please feel free to email me Alan xx

  • Hi Rush2112,

    I'm sorry to hear that both yourself and your daughter have had such a negative experience with this particular consultant. I would like to repeat what bigalan has suggested and advise you to contact PALs and provide them with details of your experiences. It is disturbing to think that other patients may also be given the same poor quality of care from this doctor at the moment.

    With regards to your daughter's situation, I would suggest that she seeks a referral to a rheumatologist with a specialisation in lupus. Hopefully this would ensure she gets the correct care despite sometimes displaying negative blood test results. If you let me know what area she lives in then I can let you know who may be the closest lupus specialist.

  • Thanks Paul have pm you

  • Please get your'e daughter strait to an experienced nephrologist or Lupus Specialist. As soon as possible !

    I'm hoping others on this site will offer advice as to how to do this, as I am posting from Australia.

    Also dig up the medical records & or get letters from the Rheumatologists your daughter has seen in the past who have treated her. Have her take these with her whenever she sees a Doctor.

    I have a 33 year history of aggressive Systemic Lupus with a history of lupus nephritis, but despite this being on record, the concept of Fibromyalia has repeatedly prevented me from getting proper medical treatment.

    * Via pathology, I go from testing strongly to the condition - to it not showing up in my blood tests at all. This is called being sero - negative - or having sero - negative Lupus.

    If there is any suspicion of having Lupus or any other autoimmune disorder, please stay away from Doctors who are interested in Fibromyalgia.

    Many of us at this site have sustained real bodily damage because of Doctors ideas regarding fibromyalgia.

    As you have experienced first hand you can clearly see -

    Its just an obstacle we don't need.

  • Rush..I believe ..doctors dont understand or know anything about autoimmune, inflammatory diseases. They know how to treat symptoms, and not find what is causing the problems. I would consider talking to a naturopath, nutritionist. Go off dairy, gluten....start drinking vitamin rich smoothies, vegetables....vit c , b12, vit d....etc...also look into natural, organic oils.

    I do not listen to doctors or care to hear their ignorant diagnosis' based on nothing but their educations from the stone age. Talk to a preventative medicine dr. There are students studying this kind of medicine in the US. These people will hopefully be the drs of the furture.

    Sorry for my rant. I hope you can find a naturopath to help get you and your daughter feeling better.

    This is my personal opinion.

  • Hello Rush2112

    I am appalled that you can be treated so dismissively. I really hope you find a solution very soon.

    I have lupus and a few other autoimmune issues. recently my daughter and I have become convinced that my 8year old granddaughter has it too. She has been to a&e when she became particularly unwell and saw a consultant who said she appeared to have all the lupus symptoms and did some blood tests. But that was not followed up with any letters. Now with the amount of time that she has had off school my daughter has to go and explain those absences to the school admin in a couple of weeks time at a formal meeting.

    although I know this meeting is going to be tough, I had thought that with all the information gleaned off this site and other resources on and off the internet I had thought we should get through it ok.

    However, your experiences show that despite having so much information available there are people who still have very closed minds. I will now rethink the strategy.

    Can I encourage you to formulate a plan, writing down all the things you and your daughter need, have plan b in the wings just in case, then firmly but gently push the medics until you have reached the most satisfactory outcome that can be achieved.

    first on my list would be a change of rheumatologist!

    Good luck to you both.


  • Hi 2112

    I have been in the same situation as your daughter my consultant retired and then i was told i would see someone else and it was a waste of time he new nothing about Lupus i also have a very complex illness and was also told by this consultant he would NOT resusate me if i was taken in and could not breath as there was nothing else he could offer me with all the medication i am on, When i returned home my family were furious and staright away said we will go to pals and i must say they were very good they removed me straight away from him and i am now at another hospital were so far they are trying to take good care of me,

    Please dont let them get away with please go to pals.

    Good luck hope your daughter feels better soon x

  • Thanks so much for your reply it is unbelievable

    That they can treat people like this he didn't even say it to her face but in a short sharp letter saying her bloods were ok except for the ones I listed above so goodbye he had even said at the consultancy that she was unusal as sometimes her blood comes back strong positive and sometimes negative

    I'm glad you have new consultant but none of us should have the added stress of just trying to feel well

    Keep well

  • Thanks for your reply i totaly agree i am waiting on my PIP decesion had to go 14th December , more added stress that we can all do without i have been so ill since this has all started again dredding the brown letter but i intened to fight it all the way.

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