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  • So young, yet so many health problems... Lupus?

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    Old 02-12-2013, 04:43 PM   #1
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    Unhappy So young, yet so many health problems... Lupus?

    Firstly, I need to say how relieved I am to be writing this. I am so scared and overwhelmed at the moment and this is the only support I get and I am sorry if this is long!

    I am 18 and white female. I was diagnosed with T1 diabetes 3 years ago. I have now found out that my grandmother had Addison's.
    Before my diagnosis, I was suffering from mono. My glands were up before and I think this was the trigger for it. After extensive tests minimal diabetes antibodies are present; I have had a slow progression.
    Ever since, I have not felt right. I had blood tests after for other autoimmune diseases which were negative including Celiac. I had low vit D but take supplements.
    I have had thyroid tested lots of times and it is fine.

    Back to lupus: I noticed my hair was coming out alot more before i was diagnosed. Not tons, and not in patches, but i told my nurse who told me it was the diabetes. 3 Years on and i still have hair loss, it is getting worse. My diabetes is fully controlled. I have put it down to BC pills, hormones but it just does not add up. I have now noticed that my scalp gets sore and I develop painful pimple like spots which also itch. My joints are painful, mainly on my right side. My fingers are very sore and elbow joints ache like mad. The pain is not really noticeable on left. I have tingling in my feet; but tested negative for MS and neuropathy. I also have visual snow but my eyes are "normal". When feeling really bad, I also get intense body itching which comes and goes, worse on my legs. Nothing seems to help.

    In the past week, I have been bruising easilly. After showering my legs turned purple and lots of purple spots formed. These faded after but some remain. I also have a canker sore on my tongue. My glands are also up in my groin which makes me think EBV but it is negative. I just had a period, and symptoms got TERRIBLE after. I was bedridden. My bloods were normal minus high albumin and minimally raised liver enzyme ALT. My doctor is saying everything is all in my head so I am wary to go back; but new symptoms such as the bruising and head spots have developed since then.

    No rashes as such, except a strange itchy red blushing on limbs which only seem to last minutes and then disappear. I went on holiday in August and I got terrible sun rash. I have had this when I was very young but not since then.

    Right now I am most worried about the weird itching episodes, the head spots and all over hair loss, and the easy bruising. Does this sound like lupus? Thanks so much for reading.

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    Old 02-16-2013, 01:26 AM   #2
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    Re: So young, yet so many health problems... Lupus?

    Wildsurf, hi & welcome. I'm only a patient so please read in that context, OK?

    To get you started, I'd like to first recommend some background reading = the "sticky posts" (permanent info posts) you'll find right above the user threads. In the Skin Problems sticky, look for info re: hair loss, itchy bumps on head, purple spots (possibly purpura or petechaie?), oral ulcerations, livedo reticularis (sporadic lacelike skin mottling), and photosensitivity.

    The other "sticky" that may help most right now is the one containing diagnostic criteria for lupus. To be diagnosed with the systemic form (SLE), you generally (but not always) must meet 4 or more of the 11. These don't have to be met simultaneously, btw: you may meet them over time.

    People may meet fewer than 4 criteria & have a form of lupus that's "less than systemic", e.g., Discoid Lupus Erythematosus (DLE) or milder Subacute Cutaneous Lupus Erythematosus. (In SCLE, some people meet fewer than 4 while others meet more than 4). Finally, people with SLE range widely, from subacute (no major organs affected) to acute. So if this does turn out to be systemic lupus, please know that many people fare pretty well in this day & age, with proper followups and management.

    As I said, I'm only a patient, but your other symptoms also suggest (to dumb me, anyway) that additional testing for lupus *and* its close cousins makes sense---like your joint pain, fatigue, swollen lymph nodes, etc. Alas, a huge problem with AI's is that symptoms can evolve slowly, also that they can flare and recede. This means that one set of tests often doesn't suffice, that repeated tests are often needed. (Envision trying to hit a moving target.)

    What did the rash you had last summer look & feel like? Where on your body did it appear? Did it leave residual scars or depigmentation? Did it look the same as the one you got when you were a kid? (I'm always curious about rashes b/c I had a less-common rash for many years & had a horrible time getting it diagnosed. It turned out to be a lesser-known lupus rash called SCLE annular form. Malar and discoid are much better known... so silly me!)

    I hope someone else comments on your high albumin and slightly elevated ALT. Did your doctor have any theories, including your Type 1 diabetes, your meds, etc.?

    During my worst years, my Vit D was depressed & I had a lot of neuro-like tingling in arms/legs. One of my lab printouts suggested that low Vitamin D is one possible cause of "unexplained neuropsychiatric manifestions"---but I imagine there are many other causes possible!

    Anyway, I hope above gives you some more things to mull & that you post again soon. I'm glad you found us here. Looking forward to your next posts, with my warm wishes, Vee

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    bruising, hair loss, itching, joint pain

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