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?
- The Lupus Foundation of America (lupuschronicles.com)
- What Is Antiphospholipid Syndrome? (prep4md.blogspot.com)