MRI’s went well Monday. We have to wait for the neurologist to review. The one of the brain 🧠 (see below) was a concern to me when I read this text in the report (but then my medical training is minimal).
Yesterday was port placement, and all went smoothly. I remember seeing the big lights in the operating room and I remember thinking how wonderfully cold it was in there (I prefer cold), and then NOTHING.
Tomorrow is my first of 5 “loading infusions” and then after those over a period of a week and a half, are infusions every 2 weeks. We have learned it can take 3-6 months to find out if it is effective. Apparently this treatment is effective in 75% of patients in slowing down, or reversing some of the effects of this life-long disease. Some of the effects of this illness I have been experiencing since I was honorably discharged from the Navy in 1979, and the symptoms are progressing rapidly now and can lead to total paralysis primarily of upper and lower limbs but can impact other functions such as swallowing and many others. We will be following a traditional/alternative protocol and will be doing other things traditional medicine may or may not approve of.
In view of the extent of the expenditures we have had over the past 5 years with Cheryl’s stage 3 cancer diagnosis (about $25,000 still owed) and now my CIDP diagnosis on February 21, some friends have asked us to set up a GoFundMe (or another platform if any recommend others), so we can continue alternative protocols as well. Stay tuned if that is something that interests you. Prayer is the main thing we wish for not funds, but we do want that avenue open to those who desire it.
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