Before I get to the point of todays post, I wanted to fill you in on latest news, and technical bits and pieces…
Isolation is in the works! Gowns and masks are being brought into the small ante chamber outside my soon to be locked glass doored bedroom. Sleep was difficult to find, and tossing and turning on the triple neck tubes played a fair game of sting the neck. Weary might be the word of the day. The body finally succumbing to the toxins, and counts dropping appropriately.
Great news, however! I had a long visit with Dr. Fedorenko yesterday, almost an hour. Tell me how many physicians you know would sit by a patient’s bed to discuss treatments, studies, research, trials and results? I am a researcher at heart, delving into all things trying to find answers. In Multiple Sclerosis, active lesions will “enhance”, or light up on a standard MRI. These are usually, but not always, good indicators of inflammation and damage taking place in the brain and often spinal cord.
With malignant, or PPMS, the overwhelming majority of patients show lesions, but no enhancement. Particularly in the spinal cord as most present with motor difficulties ad progress rapidly with loss of motor function due to spinal lesions. Why is this the case?
Dr. Fedorenko explained that Tesla-1.5 and Tesla-3 MRI’s are used by most hospitals today. Although powerful, they cannot begin to show the lesion load and activity for progressive patients. Last summer he attended a conference in Vienna on aspects of the use of Tesla 7 MRI’s on PPMS patients. Of twenty five patients whose T-3 MRI showed no enhancement, 100% of those twenty five showed active lesions and enhancement deep within the brain and spinal cord. Malignant MS patients do have damage – watch us cope in the world, it cannot be denied. But visually presenting the damage as “proof” on paper has been difficult. So difficult in fact, that many neurologists deny the diagnosis of MS due to lack of enhancements on an MRI, and wave us off. I call B.S. on that!
So where am I leading? As my counts are dropping rapidly, even more so than he predicted, this leads him to the conclusion that I do indeed have many enhanced lesions that are just so deep within the brain matter they cannot be detected as of yet. Diffusion in my spine is quite visible, but he also suspects much enhancement there as well. The growing lesion on the brain stem (not a good place at all) is also effected. This newest lesion explains my shortness of breath as the brainstem controls among other things, breathing and blood pressure – hello!
Why good news? Because active lesions respond extremely well to the process of chemotherapy and HSCT! Which means he feels I will do exceedingly well in the transplantation process and recovery afterwards. Does this mean I will be 100% again – no. And I am at peace with that prognosis. Just to be able to wander the beach, walk in open fields of Bluebonnets…dare I go on with dreams?
I guess this post is perhaps a bit too technical, but to all who follow and support me with words, prayers and kindness I wanted you to share in all aspects of the procedure, and perhaps teach you something new medically. Good water cooler talk, you will be lauded for your genius.
TWO QUESTIONS I WANT YOU TO ANSWER
The only part that matters is the opening 60 seconds…
In the 2007 movie, “The Bucket List”, Morgan Freeman and Jack Nicholson play out a poignant scene in Egypt. Listen to the dialog, and answer the questions…
You can stop the video after 60 seconds. The only part that matters is the opening 60 seconds…