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Thread: Hi, let me introduce myself

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    Default Hi, let me introduce myself

    Hi everyone!

    This is the 2nd lupus message board I've joined since finding out what may be wrong with me. Im sure theres some crossover from the two sites, but I'll still include my hellos here.

    I just turned 30.. I feel like Im 70-80. I havent been diagnosed yet but heres my story.

    When I was a teen it was thought I had lupus, I went to a rheumy with some vague symptoms, raynauds, photo-sensitivity, and positive ANA. It never panned out to much except one of those we dont know if you do, we dont know if you dont... I was told to take NSAIDS and just watch symptoms. I got much better after exiting my teens.

    Back in the end of winter I suddenly became allergic to my bactrim (was taking it for acne, the only thing that EVER worked). Soon after I began getting migraines again and (new) ice pick headaches. Im not sure if thats all related to what happened next, but I figure I should include it. Then, the fatigue started. Oh god, It was terrible. It was like I became a walking zombie, I was so exhausted both physically and mentally ALL the time. I took naps right after waking up in the morning. I went to bed early.

    The joint paint started soon after. It started in my hands & feet, migrated to my knees/hips/elbows... I was hobbling around. I didnt put two and two together right away, it wasnt until my fingers & toes started to swell that I realized I had to see a doctor. The amount of pain and fatigue I was experiencing was OFF the charts. I'm not a baby by any means, and I was totally wiped out. I had a couple weird rashes, mostly on my fingers (luckily, I snapped a picture of one), very painful and big.
    On top of that, my lip cold sores, which I thought were finally getting under control were coming back to back to back and making me feel pretty bad because I couldnt give kisses to my hubby for months.

    It took me some time to see a new PCP, who had my blood immediately drawn for autoimmune, and cbc, and a few other things. She was thinking RA during the appointment and suggested starting cymbalta, along with nitro tabs for esophagus spasms I get from time to time and a rheumatologist referral regardless of AI results. She also RX'd some valtrex for the reoccurring cold sores.

    The blood results came back fast, everything pretty normal except positive ANA (no level/titer listed) and anti DS dna positive 18 (0-9 reference). My sed rate was 3, even though my toes and fingers on & off are red hot sausages.

    I started the cymbalta to see if it would help with the pain. So far, nothing. I just FINALLY started getting over the side effects. I swear I had EVERY major side effect from it. Dry mouth, extreme sleepiness during day, insomnia if I took it at night, dizziness/almost blacking out, nausea, feeling completely zoned, etc.

    My referral went through pretty quickly, once we found someone who took my insurance. The appointment is a little less than 3 weeks away with a 2 year fellow at the teaching hospital. I took the first available urgent appointment open as I feel REALLY bad. The past few days my hands feel like they've been smashed by mallets.

    Im not really concerned with whether or not Im diagnosed, more that I get treatment for this pain and fatigue as soon as humanly possible. I feel like my summer has already been destroyed (havent gone fishing once nor was I able to start the garden with my 7 year old).

    So thats most of my story so far.

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Alicake:
    Welcome to our family. I am sorry to hear that you've suffered so much and for so long. I wish that I could say that yours is a story that we've not heard; but unfortunately, many of us have been through what you are going through. Also, like you, we can trace our symptoms back to our teenage years or before.
    I do hope that, at your appointment, they decide to treat your symptoms irregardless of a definitive diagnosis. Many times, treatment is much more important than a diagnosis.
    Please take a few moments to read through the "sticky" sections at the top of each forum. You will find valuable information in there as well as some excellent advice on how to deal with medications, symptoms, and side effects. I am glad that you joined us here as we are dedicated to helping you in any way that we can. Please let us know how your appointment goes and what treatments were prescribed. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi,
    My daughter has lupus and she is in going to enter her junior year in college. She is very ambitious and wants to pursue a career in healthcare. Since she has lupus her energy level is very low and does not have much time for extra activities. I am concerned that the colleges will be looking for not only grade but also a lot of community services and internships if they want to give her admission to med school. I want to know if there is anyone who got into med school and what they did to impress the schools in order to get in with handling their lupus.
    I think dealing with lupus on a day to day basis is a lot and they should not be evaluated at the same standards as the rest of the healthy students.
    Thank you very much.
    I appreciate your answer.

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    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Bspirit:
    I do not know if any of our members have applied for or attended medical school. We do have several members who completed their college degrees while dealing with Lupus. I just wanted to make a minor suggestion to you. Lupus falls under the ADA (Americans with Disabilities Act), and as such, your daughter may be eligible for special compensation while attending school (such as note takers on days that she cannot attend class, special parking, home study, etc.). Perhaps she can find out what office, at her school, handles this and see what they are willing to do in order to help her. If it were not for these special compensations, my daughter would not have been able to complete her degree. I was amazed and grateful for the amount of help that she was given during her undergraduate studies. Please let us know what you find out and what they are willing to do for her. I wish you both the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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