mother of fourteen year old

[wert6]

Hi

I was wondering if anyone could identify with some of the things my daughter has been suffering. Last June she was admitted to hospital by my GP, she couldnt walk and had pain all over . The Doctor said i think she may have sle because of malar rash on her face he did blood tests but they were negative apart from one which was a low c4. Since then she has seen a rhuematologist who diagnosed hms. I do do not think that is all that is wrong because i cant understand how she feels so bad in herself with nausea, red face, flu like symptoms and of course her joints and aching muscle . She also has swollen lymph node which has been that way for monthes i thought it was a cyst behind her ear so i am waiting for appointment with hospital to check it. Does this sound like early lupus or just hms? It is very worrying and painful to see my daughter suffering like this with all thses strange sympto
ms. She has had a bone scan and chest exray which have been normal,
jenny

[Lily]

Hi Jenny,

I'm sorry to hear your daughter is unwell. I think you should see a Rheumatolgist with those symptoms and have a thorough check-up and bloodwork and most importantly urinalysis done.

If she had the malar rash and a low C4 count then she could have lupus but only a lupus expert will be able to establish that. GP's usually dont know a great deal about Lupus and which tests to run etc. and they are not up to date on treatments as a general rule. Good luck and let us know how you get along. Have they tested her thyroid btw? That's another thing that could possibly return a low C4 count.

Self education is important so take time to look at the criteria used to help diagnose lupus and also all the information on our home page reached by clicking the Lupus site top left hand side of page under the butterfly :)

love
Lily

[wert6]

Hi Lilly

Thankyou for responding. My daughter is seeing a rhuematologist, on the first two visits he took blood tests on the third he didn't he diagnosed hypermobility syndrome. We are due to see him again in July however since are last visit i took her to my GP about the swollen lymph nodes and he says he will writ e to the hospital as these need to be looked at. Apart from the first appointment my daughter has been well each time we see the rhuematologist. I have read alot about lupus and she does have many symptoms but i am confused about her hypermobility becuase pain seems to be the only symptom. The hospital have never taken a urine sample. I feel like i am waiting to see how she is this summer with the sun.

love Jenny

[Lily]

Hi Jenny,

It can take time to diagnose Lupus but I think if no-one has run a urinalysis on her then it's absolutely essential to make sure everything is alright with her kidneys. It's possible to have ANA negative Lupus and not be diagnosed until kidney problems are well advanced. Did the Rheumy ever run a urinalysis? If not then he's not doing his job properly. I say this not to scare you but to make you aware that not all Rheumies are Lupus specialists.

It does sound like your GP is being helpful and wants to sort it out though. So I'm sure he will run a urinalysis - I'd insist upon one.

And you are also being sensible observing her during this summer - our symptoms often exacerbate then due to sun exposure.

Low C4 was my first blood test positive, I had many overwhelming signs and symptoms of disease though. Before that I had positive ANA's then negative, they flitted about a bit, not an uncommon scenario and would not have been discovered had they not been monitoring me and trying to sort me out. But not everyone is the same, bloods are part of the picture, symptoms and clinical signs are very important in sorting through the jigsaw puzzle.

When is she due to see the Rheumy again? Do you know if he checked her for Fibromyalgia, that sometimes runs with Lupus too and can present with pain. Are they doing anything for pain relief for her?

Some of us have hypermobile joints, I've always had a few, but they didnt worry me and I dont think they are related to Lupus really. Although there could be some loose (pardon the pun) connection somewhere as Lupus is a connective tissue disease and that'swhat holds our joints together. There are some conditions that present with hypermobile joints such as Ehlers Danlos syndrome,hopefully he's checked her for that but it doesnt explain her other symptoms.

We are all different in how we present, symptoms and bloods, it can take time to sort out. However in one so young I think it's essential that bloods and urinalysis are run intermittently and a close eye kept on her. Having said that my own daughter has had some manifestations of Lupus but is currently well, her diagnosis are Raynauds and Livedo Reticularis - you can look all these terms up on the net and also search this site, it will help you to understand them - knowledge is power to get the correct medical assessment and treatment. So I keep a watchful eye on her and she's to go straight back to my doc should new things surface and not go away. I think I felt more at ease knowing all that could be checked had been and I also feel confident that I now know what signs to look out for worsening disease.

Good luck and let us know how she is going - but please get that urinalysis done, Lupus kidney disease can be very sneaky, esp in the young and it's a situation best discovered early so treatment can be started and further problems avoided.

love
Lily

[Lily]

Oh and if her rash comes and goes then take a pic, so the Rheumy can see it for himself. It's not uncommon for us to front up at the docs and them have little to look at in the way of symptoms sometimes. A good doc will take this into account though, but it did help mine in the interim to realise what was going on in between appts.

Good luck

love
Lily