Liisa just called after meeting with Dr. Sloop. I mentioned in one of my previous posts that Dr. Sloop had a consult with a leading expert in MS, Dr. Bowen. Apparently when he reviewed Rach's MRI's, he went to the hospital and met with Rachael. These kind of guys just don't show up in hospitals visiting patients.
We've always joked that Rach has always done things with flare and to the extreme, this once again proves our point. She not only caught the attention of Dr. Bowen but from what Liisa said of her case it was immediately sent to a Dr. Susac in Florida. Why send it to another Dr. if you're the expert? Because he doesn't think Rach has MS... I'll let that one sink in, YES, I just said Dr. Bowen doesn't think Rach has MS. Ahh, but for the flare that Rach brings, she might have a disease that was only recently diagnosed and there are only 201 patients in the world with it, well, now 202 (maybe?) Dr. Bowen is thinking she has Susac's Syndrome, named after the Dr. who first described it in medical journals. The same Dr. that Dr. Bowen is now consulting with.
I don't believe things happen by accident. In a normal event of MS, the treatment would have NEVER been as aggressive as what Rach's neurologist took. As he said tonight to Liisa, "call it providence, but the perfect treatment for Susac's is what I was did." Now they need to continue more of her treatments along the steroid lines and forget the interferons, as they do nothing.
Rach overnight has become famous in the neurological world too. A project that Dr. Bowen is working on is a site for interesting/difficult cases that neurologist/researchers have access to, to discuss their cases, weigh in and make comments on. Dr. Bowen wants Rach to be his first case study. More than likely Rach's case will soon be written up in medical journals and studied for years by many neurologist and researchers worldwide.
So what does it mean to have Susac's? You are essentially in the same boat as we are, as far as what we know and understand about Susac's. We'll find out on the internet. Dr. Sloop did tell us that Susac's patients "get better" which is a far cry from what we were looking at with MS. It does sound as if there is an extensive recovery for Susac's.
We are still trying to process this but as always, there is hope and your prayers combined with ours will confound the doctors.
7 comments:
WOW!!! I hope and pray that Susac's is indeed the case! What possibly wonderful news to now she may get better. We're keeping up with the positive vibes, and I'm having a glass (or five) of wine in her (and your) honor, my good friend.
Wow... that's really all I can say.
Great news, tell Rach that Kathy and I are still praying for her and you guys.
Thats incredible! keep us posted, you guys are all constantly in my thoughts and prayers
Hahahaha!!
Leave it to Rach to get one the most rare and dangerous diseases and still kick it in the butt and still come out well and on top!!
Rach, you are really a "UFC" champion!!
OMG! Unbelievable! It is great how Dr. Sloop was providing the right treatment, even though he didn't realize it then. And it is great that Rachael's situation is now in the hands of the additional doctors. Thanks for the update!
Hey George - I hope that everythings turns to the positive for guys. Those are beautiful grandchildren you have, they deserve to have their mommy back in good health. My prayers are with Rach always.
Steve
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