The summer of 2011 was a strange one. I had anxiety about everything. I knew something was wrong...but I just couldn't pin point it. I ended up going to a psychologist, thinking I literally had a chemical imbalance, and just needed meds or something. She ended up saying (which in hindsight is fucking hilarious) that I was too overprotective of my son, and I had a fear of being misdiagnosed from Doctors. Um. No. I do have a fear of Dr's. I had a horrible experience when I had my son, which is a whole different topic, that lead me to not trust any Dr. The are practicing, they're not heroes, they're not perfect. So I blew off her suggested "Group Sessions" and just kept living with this weird shit going on.
Fast forward to August 2nd. I had the weirdest sensation that kept happening when I would bend my neck. It was like electricity surged through me down to my feet-every single time I bent my neck. It scared me shitless the first time, but of course, I blew it off. Then I had a weird rash pop up. The Dr's just said I must've been under a lot of stress because my immune system was out of whack. I also went numb. My left arm from my elbow to my pinky and ring fingers were numb, and that wrapped around to my neck by my shoulder blades. I talked to many people, most said I had a pinched nerve and to go to a chiro...never been to one before, so I went. He said he could "feel" the pinch and that it was significant, that I needed to have some nerve therapy and I'd be fine. Went through with the therapy, went home. Next day, both legs are numb. Nope. Pretty much panicked through the day, went to my Mom's who knew I was scared to death. We didn't know if I had a stroke, if I had a blood clot, what the hell was wrong, but all came to the agreement that it wasn't a pinched nerve. I just knew something was wrong, I couldn't have all this weird shit happening then be completely normal. So I go to the Er with my fiance that night. The triage nurse told me I probably had a pinched nerve, not to worry...I had a slight hopeless feeling, like no one is going to figure this out...I'm going to die some horrific death and no one will ever know why. I tell the Dr. what's going on, the numbness, the neck thing, the anxiety. He starts off with what I think are simple neuro tests. Walk on your heels, raise your arms, blah blah. Then he tells me I am getting a CT Scan to check for life threatening diseases. That sent me into full on freak out mode, but I powered through. My scan showed lesions, and the Dr. basically walks in the room, sighs, and says "looks like you have MS". My life, in that one sentence, was forever changed. I was sure he was right. I watch a lot of YouTube, and one channel I'm subscribed to it a fellow makeup lover, comedian named Justine. She has MS and throughout the years of watching her, I've learned quite a lot. I didn't know you couldn't definitively test for MS, I didn't know a CT wouldn't prove anything, I just knew my symptoms, combined with this Dr's statement was right. I was going to be a crippled mess in no time. I wouldn't be able to run with my son, to walk through the store, take care of myself as time progressed. I was instantly a burden to all I loved. I was hopeless. I was helpless. My Nate was with me of course, as the world turned into a spinning shitstorm, he held me, and promised things would be fine. We would be fine.
I got a referral to a Neuro some weeks later. Did the awful MRI's. I LOATHE MRI's. I refer to them as torture tubes. It took 3 tries, but I did it. The contrast showed I had many active lesions on my Brain and 1 on my Cervical Spine. I also had an EVP because my right pupil doesn't dilate correctly...that test came back ok. I'll post pics of my scans soon!
I researched every chance I got. My MS is Relapsing-Remitting, so it has "flares" or "exacerbations". The more "active" lesions you have, the more symptoms so to speak.
Here is the Multiple Sclerosis Foundation Definition:
What is Multiple Sclerosis?
Multiple sclerosis (MS) is the most common neurological disorder diagnosed in young adults. Its causes are not yet fully understood and researchers continue to search for answers. MS is not contagious and does not shorten the life expectancy of those who are diagnosed with the disease. Although the disease may not be cured or prevented at this time, treatments are available to reduce severity and delay progression.
MS is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves and spinal cord. This disorder damages the protective insulation (known as "myelin") surrounding the nerves (known as "axons"), and may also damage theses nerves within the CNS. As a result, nerve impulses carrying messages from the brain and spinal cord may short circuit, causing reduced or lost bodily function.
The effects of MS differ with each individual. Some people experience symptoms for a short period of time and afterward may remain symptom-free for periods or months or years. While others may experience a more steady progression of the disease.
Most researchers believe MS is an "autoimmune disease" -- one in which white blood cells, meant to fight infection or disease, are misguided to target and attack the body's own cells. This attack causes inflammation in the CNS, which may damage the myelin and ultimately injure the nerves.
Areas of inflammation are known as “lesions” or “plaques.” The changes in size, number, and location of these lesions may determine the type and severity of symptoms. Frequently, however, MS may be “clinically silent,” showing no increase in symptoms while continuing to show signs of disease activity within the CNS.
Additionally, areas of thick scar tissue may eventually form along the areas of damaged myelin. The term “multiple sclerosis” originates from the discovery of these hardened plaques. Multiple refers to many; sclerosis refers to scars.
Researchers have studied a variety of possible causes for MS, and a combination of factors appears to be involved. A popular theory looks at commonly known slow-acting viruses (one that could remain dormant for many years), such as measles, herpes, human T-cell lymphoma, and Epstein-Barr. After being exposed to one of these viruses, some researchers theorize that MS may develop in genetically susceptible people. Research to identify the specific genes involved in MS is also ongoing.
Some scientists are looking for a connection between MS and nutritional factors, including fat intake, as well as deficiencies in fish oil and vitamin D. In addition to food and supplements, vitamin D is also derived from sunlight, which may be involved in the development of MS. As noted in the following section, populations living closer to the equator (and exposed to more sunlight) experience a lower incidence of MS.
So yay me!
After researching the DMD's-disease modifying drugs, since there isn't a cure, I came to the conclusion the current meds available are not for me. It's basically a poison with a 30% chance of shrinking the lesions you currently have. No thanks. I'd rather not feel more like shit everyday of my life and stick myself with a needle for 30%. Most of the meds are interferon based, basically what your body produces when you have the flu-therefore causes "Flu-like" symptoms. Nope. There isn't enough info about this disease to begin with. Until you find a cause, you won't find a cure. My Neurologist isn't too happy with me deciding against them, and likes to reiterate that fact every time I see him. The eyesight loss is the scariest symptom to me. Happens to most. It's called Optic Neuritis. Scary shit. He somewhat threatens me with that when I tell him I'm still sure I don't want the meds. I have to see him once every 3 months-apparently for the rest of my life. :/ So I'm just hanging out with this...no hope of it going away, just hope that I walk every morning when I wake up. That I will not slur my speech, or piss my pants. It's a daily struggle with the unknown. I'm still very angry about it. I would like to just flip the fuck out from time to time, but for what? It won't change anything. Every day for the rest of my life I'll be in fear of what will happen, what could happen. I make jokes, make fun, but it's just a way of dealing. My Mom NEVER thought my jokes about building wheel chair ramps, or getting me a beach wheel chair were ever funny.
I do have daily symptoms now, but I'll update those next time. :)
Fyi: This blog will be random rambles. I'm not a writer, I'm just telling my story. Apologies in advance.
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