Post by StephDRebel on Feb 3, 2021 14:01:07 GMT
Small kind-of update: The biggest news is there is no news right now.
Yep. Still.
MS is pretty much off the table. He got the super weird rash on his back in August and then it eventually went most of the way away this month buuuut now his entire body is covered in one that is even worse.
I'll post some pictures later but he has a rash that started along his vein lines that was just red and circular and got kind of crusty but it's been rapidly spreading. It's literally eating him alive.
It was terrible on his underarms, under his breast area, along the folds of his hips/groin, and on his hands and feet mostly. it's blistering and then cracking open so he has 1/4 inch bleeding cracks on his hands and feet, blisters all over his arms and legs and now across his stomach it's starting to scab over. I got woozy last night with the new progress, but it looks like he's got about a quarter sized spot that is scabbing and starting to open up.
In the last 30 days we've seen his primary, rheumatology, dermatology (3x), infectious disease, and he has 7 more appointments scheduled this month including a blood specialist. So far they've all said "This is fascinating but we have no idea." His last round of bloodwork his primary said "if I hadn't seen you with my own eyes I would believe this bloodwork belonging to someone in your condition was a prank by my staff."
The rash doesn't itch but it HURTS. he's been soaking in epsom salts 4-5 hours a night for a bit of relief but the pain just keeps shooting through his body.
He had a round of steroids that knocked it down some but it came back with a vengeance as soon as he finished the meds and the allergist he's seeing this month wants him to not take anymore so that he can get accurate readings. (trying to see if it could be the metal they used in his back for the surgery)
It seems that MS is off the table, it hasn't been mentioned in months.
The real reason I'm updating is that we've been working with Mayo Clinic for months for an appointment and they've been having him send pictures in periodically but this is making his case more urgent. The scheduler is supposed to call him back today (I need ALL of your good juju!) and they may be able to get him in at the Minneapolis location at the end of February!!!
Yesterday they said it could be 7-10 days of testing so we're waiting to hear back so that we can figure that out. First thought would be that he would go to MN for a week alone and shack up in a hotel and go through all the testing while I stay here with the pets (they can't be boarded), and then I could fly out at the end for the meeting with test results/conference with the doctors.
We've got a lot of plates spinning right now and none of them have any direction still but we're committed to figuring it out before it kills him.
PLEASE SEND HIM YOUR HEALING ENERGY AND PRAYER AND PLEASE PLEASE PLEASE LET THIS BE THE TIME THAT MAYO PULLS THROUGH AND CAN GET US IN!
Yep. Still.
MS is pretty much off the table. He got the super weird rash on his back in August and then it eventually went most of the way away this month buuuut now his entire body is covered in one that is even worse.
I'll post some pictures later but he has a rash that started along his vein lines that was just red and circular and got kind of crusty but it's been rapidly spreading. It's literally eating him alive.
It was terrible on his underarms, under his breast area, along the folds of his hips/groin, and on his hands and feet mostly. it's blistering and then cracking open so he has 1/4 inch bleeding cracks on his hands and feet, blisters all over his arms and legs and now across his stomach it's starting to scab over. I got woozy last night with the new progress, but it looks like he's got about a quarter sized spot that is scabbing and starting to open up.
In the last 30 days we've seen his primary, rheumatology, dermatology (3x), infectious disease, and he has 7 more appointments scheduled this month including a blood specialist. So far they've all said "This is fascinating but we have no idea." His last round of bloodwork his primary said "if I hadn't seen you with my own eyes I would believe this bloodwork belonging to someone in your condition was a prank by my staff."
The rash doesn't itch but it HURTS. he's been soaking in epsom salts 4-5 hours a night for a bit of relief but the pain just keeps shooting through his body.
He had a round of steroids that knocked it down some but it came back with a vengeance as soon as he finished the meds and the allergist he's seeing this month wants him to not take anymore so that he can get accurate readings. (trying to see if it could be the metal they used in his back for the surgery)
It seems that MS is off the table, it hasn't been mentioned in months.
The real reason I'm updating is that we've been working with Mayo Clinic for months for an appointment and they've been having him send pictures in periodically but this is making his case more urgent. The scheduler is supposed to call him back today (I need ALL of your good juju!) and they may be able to get him in at the Minneapolis location at the end of February!!!
Yesterday they said it could be 7-10 days of testing so we're waiting to hear back so that we can figure that out. First thought would be that he would go to MN for a week alone and shack up in a hotel and go through all the testing while I stay here with the pets (they can't be boarded), and then I could fly out at the end for the meeting with test results/conference with the doctors.
We've got a lot of plates spinning right now and none of them have any direction still but we're committed to figuring it out before it kills him.
PLEASE SEND HIM YOUR HEALING ENERGY AND PRAYER AND PLEASE PLEASE PLEASE LET THIS BE THE TIME THAT MAYO PULLS THROUGH AND CAN GET US IN!