LUPUS OR NOT???

[thecrazy1]

I have been backwards and forwards to the doctors recently.
it all started after i had my gallbladder removed and i was still experiencing liver pain so my doctor ran some routine blood tests it came back and showed that my alk phos in the lft was 141 i/ul i was also complaining of fatigue general aches and pains along with weakness to the legs so he ran additional test
this showed that my sed rate was up to 26 mm/h and my crp was 50 mg/l my rf was 1 iu/ml and the ana was negative so that rules out SLE he said.
next time he decided to test the liver further and found the alk phos was still high and the gamma gt was elevated indicating liver rather than bone also he asked me how much i drank my reply was nothing i dont drink at all he then decided to run an immunology test called AMA this looks for a disease called PBC but to my luck (or not) they done the wrong test they tested for ANA this time it came back slightly positive.

my doctor said they would not normally test again if the result was negative now he doesn't know whether he should send me to a liver doctor or a rhuematologist he thinks it will be the liver doctor to test further for this PBC so i still dont know if i have lupus or pbc or something totally different

please help

let me know what you think

here are my symptoms:

ruq pain
sun sensitivity
joint and muscle pain
bowel changes
itching
smokey eyes
dizziness sometimes
pins and needles
night sweats
and others
its a lot worse during my period

also i have a rash on my face but i have had that for years

kind regards

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hello, and a warm welcome to this site. We are here to always offer help,
and support, and share our experiences with each other. None of us here are
doctors. A lot of us here are nurses though, and the first thing I would say as a
nurse is, never try to diagnose yourself, and a nurse, as I am, would always tell
you that if you have questions about anything that your dr. did and that you don't
understand, always, always, ask your dr. to explain it is terms that you can under-
stand. Take pen and paper with you so that you can write it down, so that you
won't forget it. You did not say what kind of dr. that you saw, and your symptoms
were very vague. Only your dr. knows why he preformed each of the tests, and
what results hes wanted and what those results mean for your own body.
I wish that I could be of more help to you, but, quite honestly I can not. I wish
you the best is getting an explanation from your doctor.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[helloos]

Hi there. nice to meet you.

After reading your post, I would say that a referral to both doctors could not hurt. The rhemo can test for autoimmune and follow your symptoms and the liver doctor could also check your liver out. I would say that you do have enough symptoms to get tested for things and at the least for them to treat your symptoms.

As for the rash on your face, have you ever seen a dermatologist for that? I would suggest to get an appointment with one and have that rash looked at.

Also between the time of your visits keep a complete list of your symptoms, take pics of your rashes, swelling, redness, etc. in case those symptoms are not present at the time of visit.

How did this doctor leave things with you? Did he say"I'll think about who to send you to ?"
I would see both.

Hope that helps.

[wifajax]

Hi crazie!

My mom has autoimmune hepatitis (AIH), and the symptoms are similar to lupus. Do you know if an anti-smooth muscle antibody (Anti-SMA) test was done? A positive ANA and a positive Anti-SMA tend to point at AIH. The AMA test is important, too, because it is found almost exclusively in primary biliary cirrhosis (a chronic inflammation of the bile ducts in the liver). Both diseases are caused by a haywire immune system, and found mostly in women.

Since your LFTs are abnormal and you've had a low-positive ANA, I would recommend you see the liver specialist first. AIH needs to be controlled quickly to prevent permanent damage to the liver. If you have it, the doctors will want to start treatment immediately.

Good luck, and I certainly hope you DON'T have AIH. It scares me more than lupus. style_emoticons/<#EMO_DIR#>/ermm.gif

Terri