Diabetic Cyborg Life: Brain Lesions & A New Neurologist
August 13th is my thirty-sixth birthday and honestly that is about a decade longer than I thought I would live as a teenager. The state of obesity and health care that was my life then might make a case for that an early expiration date for my life. Weighing one hundred and eighty pounds at age sixteen made me one hundred pounds over the average then.
This fact of poor health and geographic location and economic factors were why assumed death was not far off in my teens. Being a little reckless in driving and life was more to add that my quick out from existence. That in ways made my life like it is now and you know of from blogs and vlogs.
Losing half my body weight leads to a type 2 diabetes diagnosis in 2005 and further unhealthy living with a ton of bad food. Now I am so much better off with my illnesses that were coming no matter what. Reaching 36 is a miracle in my life as I see it, and I am endlessly thankful to be alive and tell of the life’s experiences for all to read.
Life with active brain lesions is one fraught with my wondering if I am experiencing health or physical symptoms without my knowing. Know that the lesions are actually firing and my sitting and doing nothing to address them is nerve-racking. The option to get the steroids needed to stop them as an inpatient or outpatient is continually haunting me like the ghost of past bad decisions past.
True that I Copaxone is still in my system and the three times a week injections are still in place. The mental impact of knowing the three weeks without meds is the cause for the lesions is not sitting well with my psychological health. Knowing the drama with my health insurer makes me want to scream bloody murder at anyone that questions the need for a single payer system in America.
Psychosomatic signs are starting to get to me while trying to make it to my coming neurologist’s appointment. Thankfully, the neurologist’s nurse called and told me that my infusions will start just after my appointment with my neurologist. That was a load off my mind and stopped the symptoms I was having.
A real tragic thing will be if the pause in medication helps my relapse and remitting multiple sclerosis, or RMS, become primary progressive multiple sclerosis, or PPMS. That concept is very unlikely for now though. Though it is common for patients with RMS to eventually become a case of PPMS.
The reality of my having PPMS will come much later, but the nurse saying these lesions were deep in my brain makes me wonder if they are worse than they were in 2017.
All that talk of maybe having PPMS now might prove true if the specialist I was referred to see that it is indeed true. My current neurologist said she did not like the fact that the lesions and state of my brain was degenerating and switched me to Ocrevus as my primary and only medication. That drug is similar to the interferon that caner patients get. It is a three time every six-months a year treatment that takes a total of four to five hours to infuse in my body.
Further appointments for my MS will be at the specialist in Dallas at UT North West in their MS division’s care. From all the literature that I found online while getting my meds I see that it is the exact place I need to go for my health care. The head of the MS center, Dr. Benjamin Greenberg, was the neurology residence at the Johns Hopkins School of Medicine for years and internationally known as an expert in treating rare autoimmune disorders of the central nervous system. So he might be the doctor I needed since 2005 when my old PCP said I suspected I had an autoimmune condition.
Insurance clearance was a two-hour process that thankfully ended in the approval of the procedure. After that I was infused and about five hours later I was finally home from the mornings long slow process of the check-up and the meds I needed for days.
Truthfully, I hope that the international rep the head of the MS place in Dallas is able to get me in contact with a socialized medical state in Europe. It would be the dream if they are also willing to pay me to study my case and pay to move the family and I. That is just a pipe dream at this point, but you never know if someone is looking for a case like mine.
This dream is just a welcome distraction to the reality that is probably what I am facing with my autoimmune issues. In all reality, the likely possibly is I am suffering from neuromyelitis optica, or NMO). The disorder is also known as “Devic’s disease” or “Devic’s syndrome.” This autoimmune disease causes many issues with the spine and brain that can cripple and make life that much more difficult to live.
Yet, the good news is that the head of the MS wing of UTSW, Dr. Greenberg, is known for this exact disorder. The Dr. I will see is Dr. Shanan Brinson Munoz, an “Assistant Professor in the Department of Neurology and Neurotherapeutics at UT Southwestern. And, she specializes in multiple sclerosis and neuromyelitis optica.”
This all does nothing but make me have greater hope that the future and finally addressing the ailment that made me diabetic and possibly have PPMS. This has been coming since 2005 when my old PCP guessed I had an autoimmune issue that caused my type-2 diabetes. Fourteen years later the true issue might finally be addressed.
Yet, now I deal with more insurance issues and another referral from my current neurologist and PCP. I might be on the way too somewhere in Houston now. Nothing really seems to change in my health journey of one door being slammed in my face when all seems to be clear for resolution. That idea that maybe answers were quickly coming was mistaken.
A conversation about my health with Michelle Monet made her to want to collaborate on a piece about my story. That idea is awesome to me honestly! This makes me want to tell her to go nuts with any health information she wants and make a book over just a Medium piece.
The book idea is an idea that was haunting me for a while now. I attempted to start something once, but it was just reusing a blog with an introduction before it and a short transition to more that never came. Any effort by Michelle will be awesome to help me in sharing my life that I hope will move others to persevere all the bad that life can provide them.
Like this blog? Watch the Vlog coming Thursday, August 14!
