My "Journey" with life, Multiple Sclerosis & Fibromyalgia
MS Brain clipart
What is Multiple Sclerosis?
"Multiple sclerosis (MS) is a chronic disease that affects an estimated 2.3 million people around the world, for which there is currently no cure.3,4 MS occurs when the immune system abnormally attacks the insulation and support around nerve cells (myelin sheath) in the brain, spinal cord and optic nerves, causing inflammation and consequent damage. Damage to these nerves can cause a wide range of symptoms, including muscle weakness, fatigue and difficulty seeing, and may eventually lead to progressive disability."
An introduction to my book and me (via press release)
Since this was the very first hub I did when I started writing my book, I have decided to put my press release here. The other hubs I have here are parts I wrote for other chapters. -yvonne
"While finishing her degree in Gerontology at Umass Boston, Yvonne Decelis started working on writing about her life in the hope of showing others with similar conditions that they are not alone in the trials they face. In this book, she goes over what life has been like living with Multiple Sclerosis & Fibromyalgia. She does this by going over her upbringing and life prior to, during and after diagnosis. She also covers things like medications, “healthful living”, work, SSDI disability benefits, friendships and relationships, etc.
Yvonne also wrote this for people seeking information on how to interact with others who have "invisible illnesses" like MS, Fibro, Post-traumatic Stress injury, etc.
From Yvonne: My interest in the field of aging and disability is almost lifelong. I have always felt that we do not always treat older adults and/or members of the “disabled community” with the respect and kindness they deserve and I am hoping to help change that."
My Multiple Sclerosis (and Fibromyalgia) "Journey"
I was diagnosed with Relapsing Remitting Multiple Sclerosis (MS) in December of 1994. While I thought this news was devastating, I was relieved to find out things weren't much worse. In February of 1993, I went to the Hospital for what I thought was an odd bout of pink eye. I realized how wrong I was when the doctor looked at me and then went to get five or six of his "colleagues". They all looked at me and spoke as if I wasn't there (in third person). My symptoms were that, whenever I looked at something diagonally, my vision would double and get blurry. I also found out my pupils were two different sizes from hearing the doctors discuss me (I felt like a lab rat. They may has well referred to me as an "it" - that's how they made me feel.)
Eventually, I was informed (very "matter-of-factly") that I might have a brain tumor and that there were no MRI machines available. I had to go in the following day. To "ease the news" for me I was told that I had "classic stroke symptoms" and that I was fortunate they weren't testing me for that. He said those tests were far more intrusive and/or harmful.
The ride home on the subway from this appointment was awful; it was impossible not to cry in public. A man to my left asked if I needed help and I shook my head no. He then loudly said to the girl with him that "it's OBVIOUS there's a problem. She's sitting there crying." At the following stop I jumped out to get into another car but on the way out I yelled at him. I said "I got on the Train at a Hospital stop. Put 2 and 2 together you idiot!"
My first MRI was a horrifying experience. I've come a long way from that (I fall asleep during the scans now!) I wound up having to come out for a bit from the extremely closed-in sensation. The results came in about 3 days after I had the scan. I was told I might have Multiple Sclerosis (MS) or Lupus but the doctors weren't certain. I managed to put the entire ordeal completely out of my mind for about a year following.
Now I'm going to fast forward a bit in the interest of not wanting to make your eyes bleed. I appreciate you taking the time to read this so I will refrain from babbling as much as I can. In an effort to be succinct, I will be skipping many details but I will fill them in as I'm able. Please bear with me.
In December of 1994, I had a new problem that I couldn't figure out how to explain to the Doctor who I went to see. I knew it was a visual problem. Things looked blurry and if I turned to look sideways everything doubled and tripled up. Thankfully, at this point in my life I had health insurance so I was able to see a PCP. I was then sent to see an eye doctor who did a visual range exam on me. After the exam, he told me I needed to have an MRI.
This news didn't make me very happy. It brought the incidents from the following year back to my memory. Thankfully the second MRI I had was nowhere near as bad as the first one. In two days I got the results while I was sitting at my desk at work. It was very difficult being told I probably had Multiple Sclerosis (once again) over the phone.
It was also a very frightening thing to find out it was very likely that I had MS. I knew absolutely nothing about Multiple Sclerosis when I first found out I had it. I thought it meant that any morning I could wake up unable to move. The first Neurologist I had did absolutely nothing to assuage my fear. Now before you read this, please bear in mind that this Neurologist didn’t know what he was talking about (with regards to Multiple Sclerosis). I can’t bear the idea of another newly diagnosed patient reading this blatant misinformation and becoming frightened by it.
This Neurologist told me about a patient he had who came to him saying that her left arm and leg were tingling. He then told me that she quickly lost all feeling in one side of her body. I had no idea that this Doctor was using a very bad example since MS was something I still knew very little about. My mother was at this appointment with me and this idiot doctor managed to terrify both of us with this thoughtless comparison.
Thankfully I was able to find a new Neurologist who specialized in working with MS patients and he was able to completely calm both me and my mother down. Unfortunately, for the first few years after my diagnosis I had a few exacerbations (aka MS Attacks or flairs) at a rate of (approximately) one per year. The first two were bouts of Optic Neuritis (the first one being the strange eye trouble I had before being diagnosed. The second was a small blind spot in the same exact location for both eyes). I then had an attack that affected my mobility. The following (and the worst) attack was when I lost all feeling in my left arm.
Being left-handed, this caused a lot of trouble for me. Even though I have had almost full recovery from the MS Attacks there were residual side effects from all of them. I can’t write more than a sentence without being in pain (and my handwriting and signature both have changed quite a bit). Typing hurts after a while but thankfully I’m able to do a bit of that. I also now wear contact lenses (can’t wear glasses due to a nasal surgery I had a few years ago. The glasses press up against the scar and are very uncomfortable).
This last attack was in 1998. In 1999 I learned about Montel Williams being diagnosed with MS and I started to follow his progress. I’m really glad I did as it helped me help myself. When I read about his athleticism which I could see for myself when seeing him on TV I decided I was going to do whatever it took to fight the “MonSter” (as we “MS’ers” like to call it).
As much as I hate having this condition it was truly a wake-up call for me. Thanks to me deciding to become athletic I eventually quit smoking (8 years ago as of now) and developed an almost religious workout regimen. As far as the exercise goes I’m in better shape now than I was when I was in my teens. Please keep in mind that at this point in my life I’m certain I was born with Multiple Sclerosis since I have always had a lot of health problems that only MS would explain. My mother has informed me that I’ve had a tremor ever since I was an infant.
Once again I plan to skip some sections of my life so I can bring you to the point where I found out I also had Fibromyalgia. Multiple Sclerosis can cause very painful symptoms like spasticity pains. There is another problem called an “MS Hug” which, in my opinion, should have a different name. “Hug” makes it sound almost pleasant and nothing could be further from the truth. It feels like a corset is getting very tight (understatement) around the torso (or as another MS patient once said, it feels like the torso is being crushed by a giant gorilla). I didn’t start experiencing the MS pains until after my attack in 1998.
Unfortunately the pain troubles just kept getting worse. After being laid off from a job I had for almost twelve years the pain became unbearable. The reason for this was likely to be stress but it also had to do with my workout schedule being “interrupted” for a brief period. A few years after I was let go, my stepfather passed away. When this happened my mother and I became much closer and I found out she had Fibromyalgia. I had heard about Fibromyalgia but didn’t know much about it. I certainly hadn’t considered the possibility that I might have it as well.
Thankfully one of my MS friends told me about something called Low Dose Naltrexone (LDN) but I was never able to get a clear handle on what this drug was or what it would be good for. After I found out my mother had Fibromyalgia I decided to ask my Neurologist about it since I was having so much pain trouble that I was on a running dose of Percocet, something I was very unhappy about having to rely on. Ironically enough, my mother had met another woman with Fibromyalgia who told her all about LDN.
At this point I am going to end this “chapter” in my writing but I will definitely be putting more information back up as soon as I’m able. My goal in life is to teach people how to improve their quality of life (QOL) but life has a knack for “getting in the way” when I set my sights on accomplishing things. If you are reading this and are interested in finding out more please be patient with me and know that I will be coming back to this in the not-so-distant future. Thank you very much, by the way, for taking the time to read this. I really hope it was helpful for you.
Updated note (added on 1/6/2013): I am splitting up what I am writing into sections. There are links to all of them following this line of text.
This is an Introduction to my new (as of July 2015) video journal in Youtube
Info on Fibromyalgia
- Questions and Answers About Fibromyalgia
Info on Fibro by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) - Questions and Answers About. N.p., n.d. Web. 11 June 2013.
Do our backgrounds lead to our health issues?
- Our Backgrounds - do they lead to our health problems?
A lot of us have had many bad/stressful experiences as we grew up. This is some of my story in the interest of showing what I mean when I say we have had some serious experience with the "school of hard knocks."
Foot in Mouth experiences
- "Foot in mouth" experiences
The things people say... it is really quite shocking at times. Things like "but you look so good!" or "I know just how you feel" etc., etc. Feel free to discuss yours in the comments section.
Medications I use for MS and Fibromyalgia
- Medications I use (for MS and Fibromyalgia)
A brief overview of medications I have and do take for dealing with my MS and Fibromyalgia (keep in mind that EVERY patient is different. Not every medication has the same results for every patient. Also: I am NOT a doctor. I am a patient and this is
My exacerbations (MS attacks, flare-ups, etc.)
- My exacerbations (MS attacks, flare-ups, etc.)
Attacks I have had for anyone who wants to read about them.
The online "nay-sayers"
- "The online "Nay-Sayers"
Why the web isn't always the best source for information.
Thanks for reading my story! Out of curiosity (optional)...
Do you or someone you know have MS or Fibromyalgia?
Book on Amazon
A collection of essays I have written over the past few years to discuss life with Multiple Sclerosis and Fibromyalgia and how I try to live well despite having these "invisible disabilities".