Discussions By Condition: I cannot get a diagnosis.

Autoimmune?

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: latejuly
  • December 28, 2008
  • 07:15 PM

Hi - I've posted here before to no responses so I thought I'd try again. I'm a 23 year old girl.

I became very ill sometime ago I lost about 35 lbs, I would get bouts of diarrhea and extreme dry heaving (but never threw up). Sometimes I wake up at night in sweats and extremely nauseas. This has been happening for over 5 years.

It's been getting worse but the symptoms have gotten worse and varied. I never gained the weight back, I have trouble eating and can only eat a little bit each day. I feel so weak and dizzy that I black out or fall asleep for a very long periods.

My compliment levels are low and my B12 and RBC are up and down. I also get heart palpitations.

I've seen doctors they really don't know, its too extreme to be IBS and the symptoms are mostly related to my general body not just my bowels.

I get big puss like rashes on my legs. I have given up gluten and lactose to no help. its not celiac.

My mother and relatives have autoimmune (Addison's Disease) but my adrenal functions tests are normal. However I do have the HLA gene for autoimmune (HLA B27).

If it is autoimmune, they say its hard to diagnosis in early stages do I have to suffer for years and years until it gets worse enough to show on tests? or is it something else?

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7 Replies:

  • It certainly sounds mysterious,but autoimmune tests should be done,and there are many types of them.
    richard wayne2b 1232 Replies
    • December 29, 2008
    • 04:14 PM
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  • What types of tests are there? Besides ANA and Compliment levels? I cant get a straight answer on this
    latejuly 9 Replies
    • December 29, 2008
    • 04:36 PM
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  • I'm six months pregnant, and I've just started noticing a scabby rash in the creases of my nose, on the corners of my mouth and chin......I have IBS, I was being treated for low back pain with an undiag. hip disorder? (pops out of socket) with Radio Frequency and epidurals. I'm 33 and weigh only 118 at 6 months preggo. I've always had huge lymph nodes, fatigue....depression. Now I have these red spots popping up on my chest, hands, thighs....they look like little pin point red spots with sometimes a dime sized red blotch that surrounds it. I'm just as clueless as you....I thought maybe Lupus? I dont know. I just started noticing the spots.....my son passed away over the summer from a freak accident and I've been so stressed....I had a friend point them out and ask what they were....now I see them all over the place on me. I was diag. with Fibromyalgia? they tested me for lupus and all sorts of things about 5 years ago and just settled on Fibromyalgia and back problems....they sent me to to a pain management specialist and that was it. the symptoms remained, the pain was managed. Now new symptoms while pregnant? I'm just as worried about an autoimmune disorder as you....I hope someone will chime in.
    Mtkrv05 1 Replies
    • December 30, 2008
    • 00:22 AM
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  • Inasmuch as there are>80 diseases caused by autoimmunity,there are many different tests for them.For example,there ara anti-thyroid antibodies in Hashimoto's thyroiditis;there are anti-intrinsic factor antibodies in pernicious anemia;then therev is the ANA,which has subsets of tests within it.I hope you are getting the picture about how really complex this really is!Again,if you had a+ANA,we would need to know the ''pattern''of it:is it speckled,antinucleolar,or whatever?We also need to know the titer:how strongly + it is.I hope this hasn't confused you even more.
    richard wayne2b 1232 Replies
    • December 30, 2008
    • 01:11 AM
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  • Sort of confused about the tests but I think I will go see my rhemutologist again although he was only interested in any muscle or joint pain i had.Re: Mtrkv: I'm so sorry to hear about your son - the rash could be autoimmune or if could be one of the below that happen in pregnancy. iw ould see your doctor and get your levels rechecked as its been 5 years, and plus, going through major grief can cause autoimmune to flare! PUPPP - (pruritic urticarial papules and plaques of pregnancy) herpes gestationis impetigo herpetiformis papular dermatitis of pregnancy prurigo gestationis.
    latejuly 9 Replies
    • December 30, 2008
    • 10:10 PM
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  • I go on the 4th of Jan. and will let her know all this crazy stuff. The spots on my hands, neck and legs are not like a "raised" rash or even an "itchy" type rash. It's more like one morning I notice a busted blood vessel and in a week I can count 20 of them and they are bigger. When you press on them, they turn white, like a sunburn color would? Right now, all the other symptoms are not a problem...(well, they are annoying, but I'm used to them)...these spots and the sound in my left ear is driving me crazy. I can literally hear my blood pumping in my left ear. If my head hurts its worse, if I bend over and such. I looked up Lupus and it seems to fit...it scared me. When I was at the store earlier I saw a lady at the register that had the same spots...I asked her what it was since I had been noticing them on myself and my friend even saw them on my hands. The lady said hers was Lupus....had my brain running, I go online and all the symptoms fit...yet I have not seen any pictures of my "spots"..the lupus rash looks different than what I have. I have the kind of crusty rash of my face right now and it started out like a "dry spot" and then it got worse. I put some vitamin E on it and it got better....I stopped using the E and it's come back in the cracks of my nose. I have never had the rash or these spots...EVER. I will let you know what the doc says on the 4th. I have a sinking feeling it will be lupus. they thought it was years ago and I did not have the spots or other "classic" type symptoms that go with it....if this is a "flare", it seems to fit the encyclopedia version of what I've researched. Thank you for your kind words about my son. It has been ***l on us these last few months. He was my world.
    Anonymous 42789 Replies
    • December 31, 2008
    • 00:57 AM
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  • I looked up all the things on your list....none of those even come close. The spots are just that....spots. They do not itch, are not raised....if you look at them, you can see that its a broken vein or something and the blood under the skin just spread from it. The only spot where I have a "true" rash at this moment is on the right side of my nose. It starts out like a dry spot....I scratched at it to get the skin off when I put on my makeup, it got red, bigger. Its about the size of a nickle right now and "feels" like dry skin, but very very red like the "spots". I wish I could find something that looks similar. Imagine an older person who bruises easily? This is what it looks like, yet not as large and with more of a circle pattern from the center where the "break" in the cappilary happened? This is my fourth pregnancy, I've never had it happen before. It's all just strange...and when your pregnant, anything strange scares you.
    Anonymous 42789 Replies
    • December 31, 2008
    • 01:11 AM
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