In June I got results from my second blood tests, all of which came back negative. The tests done were; auto antibody profile (CTD), ENA, dsDNA and C3 and C4. I was not due back to rhuemie til January and was to be tested again for the above things. However, my symptoms got worse and I had new symptoms developing so my GP asked for the appointment to be brough forward. I had a telephone appointment with my rhuemie on 23rd August and told him about the new symptoms I was experiencing (return of alopecia, chest and abdominal pains, severe loss of appetite, neck/shoulder pain, blurred vision and dizziness, brain fog were by I forget words, lose concentration, cant remember how to spell etc.) so he requested that I come to the hospital to have my bloods repeated with a few extra things tested too. I thought for this he would be testing in relation to the new brain involvement but on receipt of his letter I have noticed the only extra things he is testing (on top of the above bloods) is CRP, full blood count, thyroid function (which I was tested for last year and came back negative) and ferritin. Also in the letter he states that I said I was continuing to feel unwell with anorexia but at no point have I mentioned being anorexic, infact he knows how much I weigh and I could do with losing a few pounds if anything! So I don't understand why he would put that?
Can anyone explain why he is testing for these new things and where they think he may be going with this in terms of getting a diagnosis? I'm very confused. After researching what each blood test means I can't see how he is testing for any kind of brain or organ involvement? Thanks in advance for any replies. Hope this finds you all well as you can be xxx
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megs_tom
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Has he tested for lupus anticoagulant and anticardiolipins?. These tests can reveal antiphospholipid antibodies which can cause a variety of CNS symptoms including some you mention. These days these tests are routine!
The 'extra' tests you mention are basic/routine ones.
There are a number of specialised tests for CNS symptoms including procedures like lumbar puncture if necessary but they aren usually done as part of CTD diagnosis as far as I know and often symptoms improve when treatment is started, but I'll have to look them up.
'Anorexia' in medical language means not eating because of loss of appetite, or some other inability to eat, so he isn't talking about the psychological deliberate anorexia we are so familiar with.
So you mean nothing is going to be done about diagnosis and treatment until January because these tests results were all in normal range? That's tough but it is really hard to get a CTD diagnosis when there is no blood work to support it.
Is your GP any good? If the LAC and the ACA's haven't been done maybe he can help out with that at least. Or see if your rheumy will see you earlier. Is there any chance of going to the London Lupus Centre privately?
Not as far as I know he has not tesed for those, that is what I thought he would be doing this time round. I have just had my bloods done again 2 weeks ago with the 'extra' ones too so just got wait on getting an appointment through for the results in the next couple of weeks. Why do you think he would only do these tests and not look further into it since I mentioned the brain involvement? I swear he just makes me feel like a hypocondriac, well every gp I have seen does too. I just want someone to tell me what is wrong and give me some medication for it! There is no way of me going to London. I live in Sunderland and could not afford to go private I'm afraid
Hi there,my daughter wad diagnosed with systemic lupus a year ago after being really unwell,to cut a long story short,she had now been told she doesnt have systemic lupus,and her bloods don't point to anything specific,she had to come off all her lupus meds which have helped her hugely,and wait and see what happens again,she did have a vadculitis diagnosis for four days but that consultant changed his mind,now she has no dcs and no meds,plaquil,steroids and methorexate .apart from really high inflammatory markers she had no other things in her blood results,she has been ill for years,she has been told she can have a skin biopsy,and when het symptoms return she has to go to her gp and request a blood test.She is making a formal complaint with the help of the nurse she was seeing.Disgusting treatment,i do feel for you,if they dont know what it is ,tell you!sandy
So sorry to hear what your daughter has been through I am just at a loss and just feel like I am getting nowhere! My rhuemie is so unsupportive and I just leave feeling worse than when I went in. I have had rude comments of a gp before too. I mean you go to these people and put your trust in them to help you and they just make you feel like your going mad. Why would anyone make up that they were in pain? Some days are bearable (spelling?) but others I just want to curl up in a ball and die. When your body is aching and feels like it is just screaming out 'help me' and yet nobody is. I feel totally let down by the medical profession sorry for my rant but I have just had enough now I hope your daughter gets some answers soon and gets her complaint dealt with properly xxx
Bless ya! Don't give up , if you feel you are not being treated properly,change doc's or if you can take someone with you for support,it really does help,especially if you have somrone that will talk up for you.My daughtet has been in your place,for years she was always told that she looks ok today,now she say's what she thinks doesn't hold back like she did for years ,she may look ok today,but underneath her clothes her body is coveted with sores/scares,her kidneys have scarring ,so do her heart valves she had swelling on het brain and spinal cord! But she looks ok today!I really do hope you get soryed really soon,try to get someone to go with you,good luck.sandy.
Aww thats awful! See that is a worry of mine, that they are going to fob me off til its too late and irreversible damage has been done. The last week or two I have been having a lot of abdominal pain that feels like my organs are giving up or something, it is vey scary when you cant see what is happening inside! I'm going to see if my mam can come with me next time and hopefully that will give me the confidence to say what I feel and not let them just fob me off! Thanks for your well wishes.take care xxx
Ah bless ya,yeah if you can get your mum to go with you for support you may feel a bit better ,if not maybe a friend,or another family member sometimes it does give you the confidence to say what you want to say.I get bad stomach pains etc when i am stressed,so do both my adult daughters ,hopefully if the doctors can put. your mind at ease you will feel a little better ,i have to say autoimmune diseases are a nightmare,for my daughtet to have a dxs was good ,now she has no dxs and is back to square one.
I relate to your fear of your body giving up, before i was diagnosed with lupus a month ago I kept having these out of the blue symptoms that I could not understand and I too were terrified of the fact that my body wil just shut down and I will simply die. And that everything could have been resolved if only the gp paid attention. Now that I have a diagnosis (thankfully my husband has good medical insurance so I could do this privately) I can understand the symptoms better and the meds have also helped to calm them down. Gps forget that for a normally healthy person, any deviation from usual health pattern is worrying and that is not helped by nhs direct, for example, that basically says to go see yor gp or go to a&e if certain symptoms progress or dont go away in time. I have been at a&e many times in the past 2 years with symptoms that now I know were lupus, such as left arm numbness, chest pains, breathlessness, terrible abdominal pain. And because no one was looking at these hollistically, I was being sent home with Pracetamol and best wishes but none the wiser. Do persevere. It is your body, your health and if the doctors don't respond satisfactorily, keep going. Doesn't matter if they think you are wasting their time. As opposed to you becoming even more ill, that is nothing. Push for an explanation of the repeat tests, ask what about your brain symptoms, basically be very present with your fears and hopefully you will get more action. I get tunnel vision when it gets to my health because I knownthat if I dont push, then no one will. Doctors are there for interpretation and suggested treatment but ultimately I only rely on what feels right for me. Good luck and don't give up.
Thanks so much for your reply. I just know that I am feeling worse as time goes on and this flare up has been the longest yet (since april). I have asked my mam to come with at my next appointment and to come in the room with me. I have been hesitant of this in the past as I feel the doctor will not take me seriously as an adult of 23 taking my mam in with me but I really feel she will speak out for me and hopefully get me some answers. My mam is so happy I have asked her to come in as she listens to me daily talking about my struggles and she knows that when I get in the room my mind goes blank and I forget to mention important stuff. She suggested to write a diary of my symptoms so I have started that and am going to take that with me. I am definately going to push the subject of brain/organ involvement. My rheumie confuses me as half the time he goes on about it is nothing to worry about and but then he will say stuff like 'maybe you should take a year out of university' or 'that doesnt sound good' so I just dont know what to think I totally agree that it is very worrying when you go from being healthy to just getting these horrible symptoms, I know this is not normal for me. But when it comes to going to see someone about it I just put it off and put it off as I just get treat like a hypocondriac and I have been fobbed off for years about back problems. My rheumie still thinks there is a chance that it is post viral symptoms that could last 12 months. He is saying that as my symptoms only started august last year then he wants to see if it is that. But really my symptoms did not start only last year. I have told him that as a teenager I suffered from repeated kidney infections, shin splints, bad cramps in my calves, backache and hair loss. So really it has been a long time since I first got symptoms. Bt I am going to start speaking up, like you say no one else is gojng to push for me and only I can say how I am feeling inside. Thanks again for your reply. I am determined to not give up! Take care xxx
Yep,the diary is a great idea,best piece of advice i would give as well.I am glad your mum is going to go with you,i know you may feel like a child co's your mum is going to go in with you,but not at all,other people remember things you dont,also they see what you look like on a day to day basis.Good luck,keep us posted sandy.
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