Friday, November 19, 2010

Waiting (Is The Hardest Part)

Tom Petty had it right.  Waiting really is the hardest part.  The context was different, but the lyrics hit home.  I don't want to be diagnosed with a serious disease.  I don't want to be dependent on expensive, invasive treatments for life.  That being said, I NEED a diagnosis.  I need to know what is wrong with me.  Part of that need is to reinforce what I already know - this is a REAL condition.  It isn't psychogenic, it isn't made-up, it isn't make-believe. I am a little worried that I won't get the results back before the holiday, and that means another week of waiting. 

If this round of tests does not yield any answers, I am not sure where to look next.  I have been a weepy mess the past week or so.  I wouldn't say that I'm depressed.  I just have no idea what to expect, and being left in the dark is painful.  Out of any of the possible diagnoses, SPS seems to fit the best.  For now, I'm praying and lifting this one up.  There isn't much I can do but wait.  

What is Stiff Person Syndrome?

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.  

Is there any treatment?

People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine.  A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS. 

What is the prognosis?

Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder.  Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe.  With appropriate treatment, the symptoms are usually well controlled.

(2010 - NINDS)

1 comment:

  1. Oh Jillian, we should have just gotten together and shared a box of Kleenex this past week! I sure hope you don't have to wait through the holiday!

    I feel so bad for the psychogenic nature of what you are going through. I have watched an astronomical amount of Mystery Diagnosis, and I think every one of them were up against that as well.

    Along with feeling so sad something is wrong, THAT is just so incredibly insulting! WE know when something is wrong!!

    I hope for the best of the worst!

    I hope you have a safe, Happy Thanksgiving.

    You, my dear, are in my prayers.

    Thank you for all of your support =)

    Love to you,


    P.S. In answer to your question: Yes, the Milk Thistle and Plant Enzyme are for Avi's liver. Her # came in high, and they think it is b/c she lost so much weight. We are going to have it re-checked on Friday...I have a feeling it will be fine. Congratulations to us....we will get to go from 10-15 floors to 40-60 a day!


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