Hi, has anyone suffered blood in urine and adominal pain, but with no infection or protein.

[Dani71]

Hi, my normally healthy 11yo was complaining of stomach pain but was not 'sick' in any other way, only tiered. She did a urine test that showed 4x blood. Was sent to a&e to rule out anything acute & then sent back to gp. Blood tests show no sign of infection & now a week later urine is clear but dr thinks it shud be followed up with scan & we have to test urine every couple of days.... Because of my history.....Just wondering if anyone has experienced this type of thing with Hughes or am I just panicking ..... I always thought it wasn't proven to be passed on thru family..... Thx,

[Lesley_D]

Hi Dani, how worrying for you!! I haven't had anything like it, but would advise you push for a scan to be sure - I am not sure if it is proven to be hereditary however, if either of my sons (grown up) were to show signs of APS I would push for testing. Does you daughter have any other problems? As I wondered how you came to test for blood in urine ........

So I would suggest back to Docs to ask for scan for now and see how it goes.

Take care and I wish your family well

Lesley

[Suzypawz]

Hi, I would certainly see what a scan may show? maybe it could be some sort of bladder infection as I have had them before that show up in the docs room but not when sent off?! or even gall blader stone? with her being in pain....but has that stopped too? I'm only suggesting these as these are 2 things that could explain it....but it doesn't mean it is, I would have thought docs would have picked up on it if it was.

It may not be Hughes related either, maybe the age?

hopefully the scan will give you some answers or it could be something that will pass or already has, all the best for you & yours x

[jessielou]

Hi hon

as Suzi says it may be bladder related. I do suffer with kidney and bladder infections.

At times there is pain but no other signs of infection.

Definately go for the scan. Hope all is ok.

Take care gentle hugs love Sheena xxxxxx

[paddyandlin]

Hi dani

I get abdominal pain and the docs cannot find nothing Sy Toms docs said it more likely due to the APS and the fact that it aggrevating the abdominal wall, This illness is such its infancy that things change sometimes month by month.

I found that if i stretched it easied a bit but so far i cannot link it

Paddy

[Manofmendip]

Hi Dani

I was diagnosed with APS in 2002. I take Warfarin and 75mg Aspirin and try to keep my INR at around 4.0.

When I first saw Professor Hughes we discussed severe abdominal pains that I had as a teenager and he said that these were most likely abdominal migraines. Over the last 8 months I have had a return of many of my old symptoms, including the abdominal pains but also new symptoms too; funny turns where I feel like someone has pushed me or rotated me and this is followed by dizziness and weakness in my limbs and an unsteady gait.

Since being diagnosed I have had several bouts of haematuria (Blood in the urine) wll of which have been extensively investigated without any cause being found. My urologist believes that it is due to my anticoagulation and I agree with him but I also suspect some inflamtion is being caused by the APS too.

I have also had bouts of bleeding from the bowel too, which has also been invesigated and a very minor polyp was removed.

Best wishes.

Dave

[Dani71]

Hi all, thx so much for your fast replies. It's been a tuff week. I think when our own symptoms can be so confusing I may have panicked and was interested to see if anyone had experience of this. We have scan & paediatrician appt on tue, hopefully all will be clear. I know that some of our symptoms come & go and didn't want to be fobbed off. Thank fully our gp seems to be on the ball, I didn't think it was anything serious when we took her to dr, apart from being 8wks prem (due to my undiagnosed Hughes) she has always been healthy. Hopefully what ever it is will go & be nothing at all to do with Hughes. Thank u so much again, the worry was making me sick & thats no good to anyone. Wishing u all well,

Dani x