It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board

  • I think I may have SLE... Not sure what to do????

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 08-08-2011, 08:50 AM   #1
    sunchyn1's Avatar
    Join Date: Aug 2011
    Location: Midlothian, VA
    Posts: 5
    sunchyn1 HB User
    Question I think I may have SLE... Not sure what to do????

    My entire life I have had terrible luck when it comes to illnesses and my general health. When I was younger I would constantly have eye infections and respiratory problems. I have had pneumonia at least 10 times and am only 27 years old- the first bout that I remember was when I was 7. As a young adult I developed stage 4 cervical carcinoma in situ (21y/o) Ovarian cysts (21y/o)and endometriosis (24y/o) These resulted in a cervical conization and ultimately a total hysterectomy and bilateral oopherectomy at 25y/o. I have also suffered from seizures and carry a diagnosis of generalized idiopathic epilepsy. My epilepsy has been extremely difficult to control. Even with high doses of 2 AED's (Depakote/Trileptal) I have a minimum of 1-2 seizures every month that require IM Ativan injections. I have many orthopaedic problems of unknown origin and just underwent surgery to repair a labral tear in my hip on 7/15/11. My Ortho MD said I am a "orthopaedic nightmare from my waist down". I have had a diagnosis of TMJ since 13y/o. I have had a bilateral eye infection that is still clearing up after lasting six months with antibiotic, antiviral and even betadine wash treatments. I have had too many UTI's to count, including an instance of hemmoraghic cystitis that was so bad my uring looked like tomato juice (26y/o) I have also had kidney stones/infections and 4 miscarriages. I have two children, but both were born premature. I was diagnosed with high cholesterol at 20y/o. I am a very small, woman (5'1", 110lbs) who leads as healthy of a lifestyle as possible with all things considered. I had a plerual friction rub heard at 20y/o. I am at my wit's end trying to figure out what is causing all of this. I have also had many diagnoses in the psych department with the most frequent ones being bipolar (due to my extreme moods) and anxiety. I have had worsening difficulty with memory and concentration and a few episodes of psychosis. I came upon a site about Lupus and realized I had a lot of symptoms. My mom said that her late Aunt and her cousin both had/have Lupus. I am getting sicker and sicker. If it is Lupus it seems that I need to get treatment ASAP. Does anyone have any suggestions/input on what I should do now? I don't have any obivious skin rashes, but it seems that is the only thing that I don't have. Help me please! I am scared!

    Sponsors Lightbulb
    Old 08-09-2011, 03:44 AM   #2
    Senior Veteran
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: I think I may have SLE... Not sure what to do????

    sunchyn, hi & welcome. I'm really sorry to read about your diverse & difficult problems. Not easy! Biggest question in my mind is, have you been evaluated by a rheumatologist? They're the ones most familiar with lupus, but they also refer patients to additional specialists as indicated (neurology, nephrology, cardiology, etc.).

    Have you read the "sticky posts" at the top of the thread list? You'll find useful info on lupus & APS (antiphospholipid syndrome), incl. reading resources you could borrow from your library.

    Re: rashes, my understanding is same, that not all lupus patients get rashes.

    I really hope people with CNS (central nervous system) lupus chip in. And I'm only keeping this short so you can post more! With a big hug, sincerely, Vee

    Old 08-22-2011, 12:21 PM   #3
    sunchyn1's Avatar
    Join Date: Aug 2011
    Location: Midlothian, VA
    Posts: 5
    sunchyn1 HB User
    Re: I think I may have SLE... Not sure what to do????

    Update: I saw my neurologist and had ANA level drawn. Result was "normal" so I guess it's back to square one...

    Old 12-10-2011, 06:58 PM   #4
    Sherrybsings's Avatar
    Join Date: Dec 2011
    Location: Charlotte, NC, USA
    Posts: 2
    Sherrybsings HB User
    Re: I think I may have SLE... Not sure what to do????

    Hi. I'm so sorry to hear that you've been so sick. I've had lupus for a little over 20 years. I wanted to share something that has made me feel soooo much better. After getting nowhere with all of the traditional docs, I went to an MD who does regenerative medicine. She ordered a test to check for food intolerances. The test specifically checks your igG response to certain foods. According to web md:
    IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections.

    So... I got my test results back 3 weeks ago. I'm highly intolerant to dairy, yeast, and eggs. I quit eating these the day I got my results. By that night, my nausea was gone. By the next day I had less joint pain and by the third day, the joint pain was gone and my fatigue improved dramatically. I was so amazed at the difference that I told my friend with Lupus. She did the same test and found out she can't tolerate wheat and a few other things. She quick eating those and had the same results I did except she also had improvement in her skin and her ankle swelling went down.

    I'm just trying to let everyone know that it might help. My new doc said that 70-80% of your immune function is in your digestive tract. So if you're eating things that cause you to have an autoimmune response, you're basically making yourself sicker.

    Oh, I forgot to mention that my shortness of breath is also way better too.

    Traditional MDs may not give much credence to this test, but to be honest, I've spent over 20 years only medicating myself and getting sicker and sicker. This actually works.

    There are some labs that will run this test for you without a doctor's order, but most won't.
    I hope this helps you feel better. I'm still taking lupus meds and have just started taking the new Benlysta infusions. But I feel so much better from changing my diet that I feel like shouting it from the rooftops! Take care. : -Sherry

    Last edited by moderator2; 12-11-2011 at 06:48 AM. Reason: please do not post a commercial website, for any reason.

    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Think I have a kidney stone... anyone else? UT_mom Lupus 3 12-17-2004 12:29 AM
    What do you think? -T- Lupus 28 12-15-2004 01:38 PM
    Think My Wife Has Lupus Anxiety Man Lupus 21 10-20-2004 08:58 PM
    Lupus w/ the Flu (I think?) Please shoot me! UT_mom Lupus 10 09-28-2004 11:05 PM
    I think I may have secondary Fibromyalgia?? UT_mom Lupus 13 07-16-2004 06:14 AM
    I think it's Lupus but the doctors think I'm! Blessed4Life Lupus 8 04-29-2004 06:31 AM

    lupus (sle), lupus information, lupus? help!, sle

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:47 AM.

    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!