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Please help me! ANGELICA??? AM I CRAZY?

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Old 11-10-2003, 02:35 AM   #1
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Truffles HB User
Unhappy Please help me! ANGELIC??? AM I CRAZY?

When I was pregnant, 2 years ago I found out I am a carrier. I tested positive-meaning that the bloodwork came back (the way it's supposed to) when you have lupus. I saw a specialist who told me that I only carry the disease but don't have the symptoms?! Ok, here's my list: I suffer from
-depressive anxiety-on meds-effexor (heart palpatations, dizzyness etc. feels like I'm in a dreamlike state) MY DAD HAS ANXIETY TOO
-blood work said I have it
-I get hives periodically
-I've had those weird migraines where I cannot see, or see bits and peices, or weird lights periodically
-I've been anemic while pregnant and at other times too
-extreme fatigue /weak and sick like FREQUENTLY
-canker sores and herpes simplex on the mouth
-if I go in a tanning bed for more than 15 mins, my skin gets itchy and raised goes away after a day, but not severe
-my bones feel like they ache most the time (I thought it was due to anxiety?) feels like growing pains
-Extreme bowel problems -feels like I'm giving birth with almost every bowel movement
-maybe this one is funny, but I find the sun very bright and it hurts my eyes (maybe I just need glasses!)
-I once had blood tests and was told that my white or red blood cells were producing at twice the rate or something-if that means anything
I can't think of anything else (am at work)
-for the past 2 weeks I'm losing strength in my left hand (dominant hand) it's always numb and tingly(ring and pinky finger)
My mom and brother have hypothryoidism. I have been tested tons, and don't have it
Am I reading too much into thinking I have the symptoms? Or do I just have these things separately?

Last edited by Truffles; 11-10-2003 at 02:42 AM.

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Old 11-10-2003, 03:00 AM   #2
Join Date: Nov 2003
Posts: 67
docrum HB User
see a specialist again. SLE can cause many symptoms incl bowel pain and headaches

Old 11-10-2003, 01:02 PM   #3
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User

Hi Truffles!

In answer to your question.. NO you are NOT crazy!!!! I am unsure about how your doctor came to the conclusion that you are a carrier for Lupus. I have NEVER heard that before! Lupus can be genetic, but I would think that since you have the symptoms and the blood work that you have Lupus. You don't need a pair of glasses for the sun, those of us with Lupus are actually REALLY sensitive to the sun. Do you get hives after you have been exposed to sunlight? That would make sense because we can be allergic to the sun. I break out in hives and a rash after being in the sun without sunblock on. It is common to have anemia from Lupus too, many of us have it! I have both iron deficient anemia and B12 related anemia. A double whammy! And you do have the symptoms of Lupus, that is definite!

The migranes and headaches concern me. You should be tested for Antiphospholipid Syndrome, which can cause your body to produce clots! Have you had a history of miscarraige, DVT (leg clot), stroke or TIA (mini stroke)? If you get tingling in extremties that can be a symptom too. I posted about APS in the MS forum, it is labelled "Symptoms of Stroke etc? MS is often misdiagnosed for APS" Please go and read that and see if you fit. If you do, you need to have the blood work done for it, they are the anticardiolipin test and the Lupus anticoaglant. If you are positive for either of those or both then chances are that you have it! It can be treated with warfarin (blood thinner) or in less severe cases (no history of stroke etc) a baby asprin a day. Please get that blood work done! There are cases of "sero negative" APS too though, meaning that the blood work is negative but the person has symptoms of the disorder. Blood work is not perfect, so people can get blood work on a day when there body isnt kicking up the antibodies! Very confusing I know

I would suggest that you go to another specialist to get looked over. I think that this one that you saw was not very bright! Does your GP think that you have it? If so, get him/her to refer you back to a specialist that is good with patients with Lupus ASAP. There are many good ones out there too, but lots that arent good either. It took me a long time with many Lupus specialists in order to get diagnosed properly. It can be a long road, but you have the blood work so I hope they can get you organized soon. Take care!!! YOUR NOT CRAZY!!!


P.S. Stay away from tanning beds, they can make us really sick!

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