So, the news last week was not as favorable as we had hoped for. The MRI showed additional lesions behind my right eye, and additional lesions on the left side of the brain. Some backtracking is needed to get us where we are today. The past 12 months have had us in fight or flight mode, nonstop. We approached MS with the tenacity of a military drill Sgt …all the guts and glory full force ahead. No time for whining, why me, OH WHY ME, attitude. We had work to do. Team Evans had a challenge. A challenge we knew nothing about. No rules, no guidebook, just move forward. One step at a time. One MRI at a time.
Multiple Sclerosis is when damage to the myelin coating around the nerve fibers in the central nervous system (CNS) and to the nerve fibers themselves interferes with the transmission of nerve signals between the brain, spinal cord and the rest of the body. Disrupted nerve signals cause the symptoms of MS, which vary from one person to another and over time for any given individual, depending on where and when the damage occurs.The diagnosis of MS requires evidence of at least two areas of damage in the CNS, which have occurred at different times.
The criteria for a diagnosis of MS must include evidence of damage in at least 2 separate areas of the central nervous system, which includes the brain, spinal cord, and optic nerves
Evidence that the damage occurred at different points in time AND
Rule out all other possible diagnoses.
Common symptoms include fatigue….not the “oh I’m kinda tired after working all day, or a day in the garden, playing with the kiddos….the kind of tired you would feel 24-7, nonstop, flu-like feeling, which is aggravated by heat, cold, and progresses as the day goes on. Numbness or tingling, weakness, dizziness or vertigo, bladder problems, spasticity, walking difficulties, vision problems, bowel problems, pain, cognitive issues, emotional trauma, itching, seizures, tremors, speech problems, swallowing & breathing problems, hearing loss, and sleeping issues. I have had all the above with the exception of seizures.
So, now what? Since March 22, 2018 I have had 5 relapses, the 6th according to my specialists are up in the air, they cant seem to agree if it truly was a relapse or the return of an original symptom I had prior to diagnosis.
I am a candidate to receive treatment at the PIROGOV NATIONAL MEDICAL SURGICAL CENTER A. A. MAXIMOV DEPARTMENT OF HEMATOLOGY AND CELLULAR THERAPY in October 2018. We feel this is the right path for me now. I have tried 2 different DMD’s, both ended horribly. High dose steroids are the standard treatment when relapses occur, and they are nasty. We must have another way, another option…..I do. And I will be asking for your help.
Life has risks. Lord, just stepping out your front door has risks we would not even think twice about. All drugs come with potentially serious side effects. The “Pick your poison” anecdotes about MS drugs and the potential side effects, often times bury all benefits these drugs can deliver to people with MS. And that’s my issue with the class of drugs offered to me. Because the potential side effects from this disease can be devastating. And this is where I get NOT ok with having MS. I get angry. I get real angry. Its not a one and done disease. It rears its ugly head every minute of the day. NO rest. NO stopping. How many times can I look at someone and say, “You just don’t get it do you” well, of course they don’t get it, I DON’T GET IT! I make plans to only cancel because I feel wrecked, or my eyesight is so bad I can’t drive at that moment. Or have someone look at me and dare me to screw up what I am saying. Embarrassment, I am way beyond that. I laugh it off. This is not a woes me attitude, it is the stark reality that many do not see because all they see is me standing, moving, talking a mile a minute or at the gym pushing myself each day to maintain the muscle I have before it turns to mush and I really wont be able to get my ass up. You’ll love getting one of those calls, trust me LOL. Help, I have fallen and I can’t get up….you may be next…turn your phone on silent..:)
Read up on what HSCT is, we’ll chat later. I’m tired and I need a nap. Said me, ALL the time ever…:)
What is Autologous Hematopoietic Stem Cell Transplantation (AHSCT)?
Autologous hematopoietic stem cell transplantation (ASHCT) is a type of transplantation that uses the person’s own stem cells particularly from peripheral blood. These cells are collected in advance, stored at sub-zero temperatures, and returned at a later stage, after high dose chemotherapy or immunosupressive therapy. This is an established treatment for more than 3 decades and clinically approved for hematological malignancies (such as lymphoma, leukemia). Due to haemopoietic stem cell transplantation, the majority of the patients suffering from tumor blood diseases, who earlier were condemned to rapid death, obtained significant chances for recovery. As fundamental investigations have shown, the cause for development of autoimmune diseases is impairment of the cells of the immune system. It is not surprising that therapeutic methods, saving
hematological patients, proved to be effective also in multiple sclerosis.
Midges MS 