Never have!

[jane1]

Hi...;)...just a question......i have had three rhuemy apts and various gps ones.....like we all have...but i havent ever had a urine test done !.....i know! i dont know what im missing...:rotfl:....yes..well...is this normal?..i do have dx.....jane

[Lily]

Definitely not normal Jane! :mad: Whats up with your docs :mad:

I've peed in a jar more times than I care to remember :lol: even now things are under better control they still do this 3 monthly with me just to 'make sure'. Its part of any Lupies investigations really...........seeing as how kidneys are a favourite target of Lupus and you dont develop signs in the blood or obvious physical signs sometimes until it is well advanced.

Get stuck into those docs on my behalf will you :wink2: I think St. Thommies will be much more thorough with you, you are going there soon right?

love
Lily

[jane1]

ahhh...yes....waiting for apt to pop through the door!!:lol:.....i shall be complaining abt have every test under the sun soon then...lol:rotfl:...jane

[helloos]

That is unfortunate as it is the best way to find some problems and the easiest least expensive.

I would insist on the one the next visit. If they don't, I would tell a white lie and say that you are having some discomfort when you urinate and then they will order.

[sheila t]

You need to mention this to the specialist. I have one done at my Rheum appointment each time and my G.P gets me to do one each month. It can then pick up any problems so sooner.

Hugs Sheila xox

[LolaLola]

The other way is to take a specimen in a clean jar when you go to the surgery and hand it to them! You may find when you have been to Tommies you get handled with more respect by GPs. I have found with my family that whenever one has gone to a London hossy, the local Docs.take more notice afterwards.
x Lola

[Joandublin]

Hi Jane

I agree with Lola. At your next appointment (rheumy or GP) bring along a sample with you and ask them to test it for protein. Its such bad treatment to never have had a urine test done:mad:

I make sure I get mine tested every time I have a rheumy appointment and I also do occasional home testing with a dip stick. At my first rheumy appointment she said to me 'make sure you get your urine and blood pressure done at every appointment. Sometimes it can be forgotten'. How right she was to remind me. Ever since then, if I didnt remind the nurse to do it, it would never have been done.

Take care
Luv n stuff
Joan:rose:

[jane1]

:eek:....blood pressure.....whats that..:rotfl:....another thing that isnt done.....thanks to all...i shall go armed with specimen!!.....jane

[Clare.T]

Hi Jane

I am astounded it wasn't done at the London Lupus Centre. They take a specimen and BP at St Thomas. Your practice nurse should be able to do them for you anyway in meantimes. I have urine done every 3 months or so when I get blood tests for side effects of my meds. I Haven't ever had any concerns about BP and now I think of it I meant to ask my GP, just because I was seeing him for a general review.
Cheers
Clare

[Lily]

Yep BP is another one that is done every 3 months when I see my Lupie doc. Not only that, my GP seems to be checking it more often lately too (I see him every month), its been ok, I just think they like to keep and eye on it.

You went to the London Lupus Centre? I too am astounded they didnt do urinalysis and check BP there too~!

love
Lily

[jane1]

hmmm..no tests by them..and yes .. a private apt....last april06......they went on recent blood tests... and symtoms id been having or had over the years...:(..i also go to gps at least twice a month for something?!!...jane

[LolaLola]

I am very surprised re. London Lupus Centre. I have only been there once(usually Tommies) but I found them most attentive.
x Lola

[jane1]

yes..well as i said before....no they didnt..just because you pay for a service it doesnt always mean you get the full one!....jane:)

[dudley]

Hi Jane,

When I was reading over your post one thought struck me. If the did not do a simple urine test or take your BP what else are they not doing.

If I have no problems that come up (I wish), my doc orders a test on my heart, lungs and a 24 hour urine test. I also have to have my eyes check for plaq toxicity (I am just assuming this) by a retnal, regular eye doc and a field test. I don't know if all these tests are standard but I would look into it if I were you.

Elaine

[Clare.T]

Maybe it has to do with the fact that the LLC didn't do the blood tests, they were done by the GP so the consultation wasn't a full scale investigative one. You have to pay extra, if they do the blood tests because it is a private fee paying facility.

The real question is why didn't the GP do BP and urine. And why didn't the instructions from the LLC mention BP and urine, if they gave a list of test requirements.

I have had two private consultations of that sort over the years where the specialist was not going to assume my regular care because I was just visiting the area and no follow up was possible.

I had already been diagnosed with skin lupus and had been seeing doctors for years. I did have some blood test results with me that they looked at, but looking back from a well informed stand point I didn't really know what to ask and there were limits to what they could usefully tell me other than confirm the diagnosis.

In fact, one did give me the 100% correct diagnosis * and gave me a print- out about it but I hadn't a clue what he was talking about and couldn't understand the print- out. It was only when I got on -line found a specialist, got the proper diagnosis that it started making any sense to me.

We really do have to look out for ourselves, be as well informed as possible and make no assumptions.

Cheers
Clare

* I was diagnosed for 26 years with 'just' discoid, but it was in fact subacute cutaneous which is significantly different, usually not 'just' skin.

[laura72]

:) Hi,

Hannah has her urine and BP tested EVRYTIME she goes to hospital for checks. Never once have they not done it... infact her consultant waits until its all done before he sees her. And when she was in hospital it was done EVRYTIME she had a wee. (She was so embarrassed they showed her how to test the urine and let her do it herself once she was up and about, after that she was ok.)

All the best.

laura
Mum of lupie daughter