Ok, here's the promised update from today's visits with the doctors, and it comes with gratitude for your continuing prayers and encouragement.
The Rheumatologist working on Toni's case determined that additional blood work was needed and sent us to the lab. This means that he wants more evidence before reaching any conclusions about the presence of Sjogren's disease being in her system. It is not in itself all that threatening to Toni, except in relationship to the traumas in her spinal cord. Those who have suffered in this way seldom relapse, but a very high percentage of those who do also have Sjogrens. So obviously we're hoping to hear that it isn't present and posing a future threat.
On to the neurologist then. I'll give you the short version: despite the group's best efforts and extraordinary testing, no firm diagnosis of the condition can be agreed upon, no clear cause for the rise of the spinal inflammations can be ascertained, and thus no certain path for treatment can be prescribed. For these reasons the Neurologists have agreed that it is time for Toni to go to Dallas and Southwestern to meet with specialists there who may be able to wrestle to the ground a solution to these baffling problems. The IVIG treatments will be effective in Toni's system for up to three weeks, so the next steps need to be discovered - or the treatment repeated - within that time frame. The Dallas trip will not initially involve a hospital stay (in so far as we've been told), and I will pass along the info when that gets scheduled.
The spinal lesions/inflammations have decreased in size but they are still present and could flare up again if left untreated. They are being suppressed by the IVIG and very strong doses of steroids (Toni wishes all to know that she hasn't yet grown a beard but is bench pressing 425 pounds now, maxing out at 5 reps).
She was very weak in fact today, until around 4:00, but has had a good evening, and we hope to have her well rested for a little birthday cake tomorrow. No, I will not disclose her age, but her preference for Carrot Cake has not altered over the many, many decades I've known her.
While she is showing signs of making progress, there was a troubling development today - numbness spread for several hours to her upper right arm; that's a first, and we hope that symptom won't be repeated in the coming days.
Continue to pray with us for her full recovery and for God's mercy to overshadow all who suffer among us.
2 comments:
David--I've spoken with my parents (who live in Allen--along 75 corridor), and they would love to have you come stay with them while you're in Dallas (unless you have somewhere else to stay). They have a guest room apart from the main house just across an enclosed courtyard. It would be very quiet, and you could have keys to come and go as needed. Let me know if you might be interested, and I'll pass along their contact information. Your whole family remains in our prayers!
:)
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