Tears of joy or sadness?

This post was to be about antiphoslipid syndrom (APS) but I was distracted by social media. It took center stager life last eve when I ‘tweeted’ back and forth with the Lupus Foundation of America (LFA) . The representative presented me with sobering news: people who have lupus and antiphospholipid syndrome (APS) often have neurological symptoms

Well, I have had neurological symptoms for so long that I can’t remember a time without them. Things started with epilepsy, then minor gait disturbances, hand tremors, and  worsening of the gait disturbances and tremors, memory loss.

The rep from LFA didn’t give a reference so I could source this info and present it to my doctor, but I’ll do my own research and see what I can dig up.

I went to bed, relieved that I had a possible explanation for the neurological symptoms that have progressed over the past 12 years and plagued me: but I was also in tears because of the unknown.

Will these symptoms stay the same, get progressively worse, be my demise;  or is there a ‘magic pill’ that will control them?

Staring the unknown in the face, in the middle of the night was horrible. I didn’t feel right about waking my husband; he always attempts to minimize potential problems and right then I needed someone to empathize.

You can best be sure that I’ll contact my PCP tomorrow; should I follow-up with my rheumatologist, hematologist or neurologist? Then again, I trust her intuition and input.

Truth be told, I’m relieved that finally there may be an explanation and possible treatment for the progressive worsening of my neurological symptoms; but what would I do if I were told that nothing can be done and I’ll have to live with worsening symptoms?

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8 thoughts on “Tears of joy or sadness?

  1. I got to the point where there were just too many questions and no real answers Annie. God bless my friend, I will pray that you do find the answers that you are looking for.

  2. Thanks for sharing your pain and fear, Annie.
    You were not alone last night, as many of us suffer the same worries during the long night. I trust your PCP will help sort out the meaning of the news and that you will find good research too. Because of illnesses like Parkinson’s, there are a lot of good neurology medicines and treatment to control problems.

    • Thank you, Helen. I wanted to write on clinical ideas, but lately I’ve been feeling like the poster child for the person who needs better coping skills and support. Your words are gold!

Let us all know how bright you are and share your thoughts!