Recap: 2 months ago I was diagnosed with paralysis of my esophagus and esophagus tract. They mentioned it was way worse than scleraderma but wasn't really sure what that was at that point.
Just before Thanksgiving I went to urologist and was told I had multiple issues including neurological bladder, probable tumors and/or cancerous issues and small fiber neuropathy that was possibly pulling on bladder causing it to not work properly. Again schlerderma and other issues were discussed.
Last week I went to the dentist. I was told that all my teeth needed removed and dentures put in. However I was not healing from the last procedure a year ago so they had no idea how to do it. I was devastated.
This last Tuesday brought Thomas and I to the neurologist to discuss all these issues and my neurological issues. The doctor was concerned that I am headed in the wrong direction much quicker than expected. We also discussed that my autoimmune disorders have now become more serious than my autonomic disorders.
He believes that I have advanced schlerderma internally within my organs and connective tissues and ligaments. Also I have sjogrens and raynaulds disorders. All of this means my body is attacking itself more rapidly and shutting down organs and teeth and bladder. The paralysis is also from this and spreading to intestines and bladder.
Plan is hoping and pleading with insurance for Ivig and plasmapheresis treatments along with immunosuppressant drugs and genetic testing. Hoping the rheumatologist can identify the autoimmune responsible for this latest downturn and pray something will work.
Today, my sweet sister drove over from Glendale to take me to my appointment. I was so nervous for today and wasn't sure how I would react if indeed things were serious in the cystoscopy and biopsy. Fortunately it is not cancerous. However there is nothing that can be done for the events that are causing me to double over in pain about 5 times a week. There is no relief. So, not quite the best news at the schleraderma is causing issues there. I'm grateful I do not have to walk it alone.
So it has brought me to my knees and caused me to use every ounce of strength to endure. But the miracle s continue. My Savior sends those to surround me and lift me. He sends tender mercies to let me know he still walks with me. He reassures me of his love.
This isn't necessarily what we hoped for but we are praying the treatment options will go well. Thank you all for any prayers in our behalf. I feel them. We see the good they do. We are so incredibly grateful.
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