I am new here. And I am seeking advice in the worst way.
2 years ago I began to lose my hair. I have been gaining weight, have been very tired, and bloated, and it seems I get sick from most carbohydrates.
A blood test revealed that I had an abnormally high ANA level. I've been to 4 different rhemotologists, a thyroid doctor, and a neurologist. So far... all they've figured is that I *may* have Lupus. Everything else has come back negative. Everything is fine according to them.
First they though I had PCOS. Nope. Then it was Lupus. Still don't know. Now they're testing me for Celiac disease... which is all coming back negative.
Now they have me on Plaquenil. And I've heard this will make me lose MORE hair and maybe gain MORE weight. Ugh. And they don't even know if I HAVE LUPUS. There's no test for it afterall.
Does anyone have any advice? Suggestions? Anything. I am so frustrated. I'm only 29 years old.
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"May it be a light for you in dark places... when all other lights go out..."
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"May it be a light for you in dark places... when all other lights go out..."
I have some symptoms weight gain ,edema,hairloss ,itchy rash ,severe swollen lymphs,positive ana,c4 levels are down etc....
they still cannot tell me what is wrong???????????
Hi,
Your message sounds very familiar to me. Waiting for a diagnosis is excruciating. Everyone on this board probably has a horror story about getting a diagnosis. It was a relief when my doctor FINALLY told me that I had Lupus (and MCTD.) It's better that being crazy and/or a hypocondriac.
Also, don't worry about the plaquenil. I gain weight extremely easily, and I never gained an ounce with the plaquenil and have never heard of anyone else gaining either. I actually lost weight the first couple of weeks (which of course I put right back on after my stomach got used to it!) The only side effect I have ever heard of is pretty rare - it CAN effect your vision. You should see an opthamologist at least every six months. If it did effect your vision, you would stop taking the drug and your eyes should return to normal.
After I started the Plaquenil, I actually STOPPED losing hair. But, I do think it may have lighted my hair a few shades. I don't count that as a side effect, but an improvement on my mousy locks! In my opinion, Plaquenil is the least intrusive of all Lupus drugs. Please read more about it if you can and try not to worry.
Anyways, your email interested me because I also have grain intolerences and PCOS! (I have a laypersons theory that someday they will draw a connection between PCOS and Lupus ... but that's another topic ..) Also, my Nana and sister are Celiacs. What kind of tests have they done for the gluten? Does your doctor see a connection between Celiac Disease and SLE?
I just finished reading: Living Well with Autoimmune Disease by Mary J. Shomon. I found it intersting because it connected the dots between my seemingly unrelated health issues. You might find it helpful.
You know... I think that there is some kind of connection between Lupus and PCOS. If you've been thru the tests, and the meds, and seen the docs, you start to see some major connections between the two.
Besides being tired of being SICK, I'm so depressed... deeply, deeply depressed about the hair loss. I just had a friend tell me it's the birth control pills... and my OBGYN said no. How can you just say NO?! I've read it CAN cause hair loss. I'm getting a new OBGYN. This one doesn't listen to me. She only cares if someone is pregnant.
I was wondering if I could email you about all of this. I have a couple of questions you may be able to answer. Do you have an address where I can reach you at?
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"May it be a light for you in dark places... when all other lights go out..."
Lups or something else??? 
