xani's mom

my journey

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In about 2002 I started getting migraine headaches, and occasoinally my hands would just become to painful to use. The headaches could last for days, but the hand thing would come on suddenly and be better by morning. They did an MRI and told me it was normal and the headaches must be from stress. Over the next couple years I began to develop frequent kidney and bladder infections, plueresy, back pain. The doctors would treat whatever condition I had and didn't seem to think there was any underlying problem. Then I had a kind of siezure at work, all of a sudden I couldn't interact with those around me, my hearing seemed to be delayed and i could barely get words out. They took me to the hospital, my blood pressure was very high, they ran tests and after about an hour I started to come out of it. I was never so scared in my life. My doctor,who had for months been telling me my weakness, tiredness, clumsiness, aches, and joint pain where are just symptoms of depression, diagnosed this attack as a complex Migraine. That's when I finally had enough I insisted on being referred to a rheumatologist and a neurologist. My very first visit my rheum tested for SLE. All three tests where positive including AMA. I was overjoyed. I wasn't crazy, I wasn't just depressed, I wasn't making it up. They know what it is so now it will go away, right? Then my neuro checks the films from my MRI the day I had "complex migraine" and determines I had a mini stroke which is actually called something else, but I can't remember the terminology. Needless to say I got a new primary care doctor. Here I am five years later I take plaquinal, imuran for immuno suppress, potassium for a deficiancy cymbalta and xanax for anxiety/depression, aspirin for blood thinning, etodolac for inflammation, dicyclomine for colitis, cream for butterfly rash, and pain medication. I wonder sometimes what the doctor means by a flare, I can tell when I am completely flared because I can't move then it's a round of the dreaded prednisone, but all in all I don't feel well most of the time. I have a good day here and there and I am thankful for them. I wonder if everyone with SLE goes through the same things.
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  1. Peridot_Gem's Avatar
    Hi Heather,
    I've roughly had the same mate so here's a quick update to take matches on against your own.lol I have to laugh because if not half the time i'm blurting my eyes out.

    5yrs old freezing cold [thought i had cilblains bad but just found out now at 42 it was Raynauds]
    14yrs old till 18yrs old [Autisum]
    18yrs old [Manic depressive and put in an asylum for 12mths]
    21yrs old [two forms of epilepsey and todds-paralasis]
    24yrs old [two major strokes and layed up for 4yrs]
    28-29yrs old [plurasey twice and phemonia 3 times]
    32yr old [DVT all through my left leg full of clots]

    Since then nothing but aliments and skin trouble plus being wrongly diagnosed which the doctor's love doing and besides that joint pain like mad and waking up cramped to bits and my hubby rubbing me every morning before i can move and also muscle wastage to top the lot.

    I realy wish you all the best Heather and for adding your blog. Terri xxx