IVIG – The Lost Cause.

August 2014 marks 1 year of regular IVIG treatments.  Last August I was sent to a neurologist after a 2 month hospital stay that left doctors baffled as to what was wrong with me.  After numerous tests and ruling out Lyme disease, HIV, Lupus (to name a few), the new neurologist diagnosed me with Plexopathy, and promised to remedy my ailment and claimed that I’d be walking again in no time. 11 months later, I’m still waiting for that to happen…

The original plan was that I was to be treated aggressively with IVIG treatments – every week and then every other week, etc.  My neurologist took this approach because he felt I had been ‘neglected’ during my previous hospital stay, and wanted to hit the ground running with treatments.

And so I went to the treatments.  I endured the horrid side effects that would ravage my body for days afterwards.  Migraines, cold sweats, nausea, weakness, blurred vision, muscle pain (just to name a few), plus my regular nerve pain kept me awake nightly.  I did this all for the benefit of recovery.  My hope remained intact…

The first indication that my treatment was not working was during my 3rd checkup (this was 6 months into treatment).  The results of my strength test were poorer than they were 3 months earlier.  In fact, they were identical to my initial strength test – and this was when I could barely move my right leg.  Feeling upset, I was assured that I shouldn’t base my progress on that one test – because I could just be having a bad day and my muscles didn’t want to co operate – or numerous other reasons.  And so a little ray of hope was still lit in my heart…

On July 3rd I had an IVIG treatment followed by an appointment with my neurologist to do a strength test and an EMG.  The results were that I still had not improved in strength.  My neurologist concluded that the IVIG treatments were not being effective and cancelled any future treatments.  I sat there in stunned silence…

What is to happen to me now? I don’t know.  All I do know is that there won’t be any future IVIG treatments.  I will basically just have to find a way to live and cope with these inflictions rather than cure them, I suppose.  It’s been almost 4 weeks since my last treatment, and the pain in my legs, back and feet has been steadily increasing.

The whole situation is very demoralizing to me.  Sometimes the physical pain and mental loneliness can be too much for me to bear sometimes, but I always pushed through because I had that one small glimmer of hope of recovery to keep me going.  That hope is now gone since my IVIG treatments stopped with no new treatment in sight to take its place.

I have no idea what is to happen now.  I do have a primary immune deficiency (PID), and at the moment, I have no treatment for that.  So I sit and wait and hope that I don’t and won’t fall ill.  I’ll have to wait patiently to see which direction my medical future is heading…

Thanks for reading.  Diane.

Panoramic IVIG goodness during my last assessment.

Panoramic IVIG goodness during my last assessment.

 


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2 Comments
  1. 5 years ago
    Gui

    Stay strong! I know its hard, but we will find better treatments and something that will work! I love you!

    Reply

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