Lupus Forum - frustration with lupus tests

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Q: frustration with lupus tests

asked by: cher22 on December 22nd, 2008

New User

Hi ,
I am new to the site and I have a problem discussing these odd symptoms with anyone.
I have been reading posts here and I realise that I am with people who will understand what I am going through.
I am so tired of all the tests etc.this has been going on now on and off for 10 years..I wonder why this disease is not showing itself to prove "positive''......
My symptoms are .
Sensetivity to sun.
Headache and weakness when exposed to it.
Malar rash on cheeks and brow.
Raynauds syndrome .
Painful wrists ..thumb area's.
Dry eyes and mouth..mouth ulcers.
Body aches and pains most of the time.
Extreme fatigue.
Sharp pain in ribs just below breast.
High platelet count.
Retinal vein occulsion.
Headaches .
Blood in urine.
I've shown a ANA titer .I don't know what that means .
Also a clotting problem which can be associated with lupus.
.
My recent tests are back to normal..
I am so frustrated I just wish it would show itself so I can be treated..does anyone else have a similar problem..Thanks cher

Replies(4)

zigemyster

replied on December 22nd, 2008

Moderator

What doctor(s) have you seen? Has anyone suggested as to what it might be?

~Zig

cher22

replied on December 23rd, 2008

New User

frustration with lupus tests

Hi Zig,
Thank you for your reply..
I am under the care of Ophthalmolgist.and a Haematologist..
? mini stroke ..
Investigation and tests showed no indication that was the problem.
My eyesight is ok as the bleed was in the upper Quadrant they said.
I saw a Dermatoligist about 5 years ago and at that stage all blood tests were normal...I had the rash at that stage.
I feel that it is Lupus or one of the connective tissue disorders...Cher

sk8ter4

replied on March 22nd, 2009

New User

Porphyrias

You need to be tested for Porphyrias. Go To American Porphyria Foundation. There you will find info on this disease. None of the test for RA or Lupus will show this. The blood (looking) in urine is actually not blood but darkening of urine due to a flare of porphyins in your body. You need to find an expert in this but your GP can give you a 24 urine test PBG( cannot be exposed to light) to check for this. Then if this is positive you go to the next test as there are 11 different types. If you have this you must steer clear of certain meds and foods. The info is all on the site.
God Bless.

sk8ter4

replied on March 22nd, 2009

New User

Porphyrias

erican Porphyria Foundation. There you will find info on this disease. None of the test for RAYou need to be tested for Porphyrias. Go To Am or Lupus will show this. The blood (looking) in urine is actually not blood but darkening of urine due to a flare of porphyins in your body. You need to find an expert in this but your GP can give you a 24 urine test PBG( cannot be exposed to light) to check for this. Then if this is positive you go to the next test as there are 11 different types. If you have this you must steer clear of certain meds and foods. The info is all on the site.
God Bless.

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