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My "Journey" with life, Multiple Sclerosis & Fibromyalgia

Updated on February 17, 2016

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."

Source: TMCNET

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

Source

MS Butterly

Thanks for reading my story! Out of curiosity (optional)...

Do you or someone you know have MS or Fibromyalgia?

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Book on Amazon

It's Not as Bad as it Sounds* (my life with MS & Fibro): What life is like with invisible disabilities; ways to try to improve life quality
It's Not as Bad as it Sounds* (my life with MS & Fibro): What life is like with invisible disabilities; ways to try to improve life quality

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".

 

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    • grand old lady profile image

      Mona Sabalones Gonzalez 2 years ago from Philippines

      Thank you for sharing your experience in this article. It is a very brave thing to do, and a genuine source of inspiration. Your willingness to go into detail as far as you can possibly manage emotionally is very much appreciated. I love how you are consciously pushing your boundaries and expanding your possibilities despite this illness. Bravo!

    • FlourishAnyway profile image

      FlourishAnyway 2 years ago from USA

      Nice to meet you, Yvonne. I've been living with MS since 2003. May you continue to flourish in the face of your challenges.

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 2 years ago from Boston, Massachusetts

      Hi Annie - very nice to "e-meet" you! Do you have a facebook account? (You can also email me at ydcbook@yahoo.com if you wish). I know quite a few people who have both MS & Fibro (on Facebook). I also know a LOT of people who use LDN (there are user groups for that online too). Thanks so much for your kind note and I look forward to hearing more from you as well!

    • profile image

      Annie 2 years ago

      Hi Yvonne and everyone! So happy to find this blog. Not going to take up much of your time. I was diagnosed with MS 13 years ago, still doing well considering, and yes, get the "you look so well" thing. I just wanted to post because you are the first other person I know Yvonne, who has the MS as well as the fibromyalgia. I really don't know where my pain is coming from these days - it could be either one. Oh, and I also have Osteo Arthritis. The reason I am up this late is that the pain is just too horrible and I can't get comfortable, despite pain killers.

      Am interested to read about the LDN, and will Google it shortly. I hope to read more from you, and maybe we can have some email contact? It can be a bit of a lonely old path we walk, when other well meaning family members don't really know what we're feeling or going through. I don't want to be treated like an invalid, but do like some validation. It's hard to get that balance. Look forward to hearing more from you.

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 2 years ago from Boston, Massachusetts

      Hey - thank you so much! My mom actually was recently told she doesn't have Fibro (I think whichever "medical professional" told her that is a quack tbh). I am so glad you found something for the pain! Thank you so much re my articles btw! (I used hubpages to write a book that I had published about a year ago. There will either be a book two or a re-release. I was also thinking of doing a part-fiction; part-factual book about MS but not sure if I can stick to it). GREAT hearing from you! Thanks again and very well met! =D

    • girlpower profile image

      girlpower 2 years ago from eugene oregon

      Thanks for the hit back I just put up that hub late last night and wow already had some response. Loved your article about fibromyalgia, the roving pain explanation. I read your mom's comments and saw how she is still living with the chronic pain, until i got on the right pain med i was her, i spent a lot of time in bed and was in pain all the time. Well i went to a pain specialist and they put me on time released morphine, 30mg, it gave me my life back, it works on the part of the brain that helps you cope with the pain, i became more active, forgot about the pain for hours at a time. It's time released so it's better than pills you take every 8 hrs or so, that allow you to feel the pinch of pain three times a day. With this med you have a time released action. Tell her about this. And the massage part of my article. You don't feel doped up on this med, it saved my life from depression and pain. I will follow you, you have great articles.

    • profile image

      rekha.nsis@gmail.com 2 years ago

      Fibromyalgia is the most common musculoskeletal condition after osteoarthritis. Fibromyalgia is a common and chronic disorder. When a health illness or condition is chronic it means it is long-lasting

      visit this one also for good treatments of Back Pain, Diabetes, Fibromyalgia, Thyroid, chronic pain, sciatica, whiplash, headaches & nutritional disorders. http://www.drbastomski.com

    • profile image

      rekha 3 years ago

      Good post.....visit our site for good tertments for Back Pain, Diabetes, Fibromyalgia, Thyroid. http://www.drbastomski.com/

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      oakiejo66: Thank YOU and this was my pleasure. I plan to keep adding to this (until I have enough to have it published as a book.)

    • profile image

      oakiejo66 4 years ago

      THANK YOU

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you! I am working on a book so I will definitely be adding more to this.

    • tsmog profile image

      Tim Mitchell 4 years ago from Escondido, CA

      Hello! I am both excited and saddened discovering this hub. Well written offering a secret being encouragement is discovered through knowledge. I have a dual or triple diagnosis of Bipolar Disorder Type I, Diabetes Type II, and other stuff. I have a Dearest Best Friend with Fibromyalgia and Chronic Fatigue Syndrome. So, I am acquainted with chronic.

      I think there is so much hidden and obvious insight with this article. I encourage you to continue with the therapeutic value of writing and sharing.

      I look forward to more of your imagination, creativity, facts and fiction as you grow with us here at HP

      tim

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you very much (and I will definitely let you know re the publication of this when it happens. I still have a lot I need to add)!

    • TJCannabis profile image

      Tina H Curtiss 4 years ago from Anchorage, Alaska

      This was an EXCELLENT Blog, you are a very good writer. Love your poem above Yvonne and I like very few !! I'm on that same ROLLERCOASTER with you and I hope someday to get off as I'm sure you do also !!

      You had some really great comments from others also, was a pleasure to read the entire Blog & Comments ! Let me know when you publish your book, cause I will buy one!

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you very much Andy - I appreciate your review (like what I've read on your hub pages so far too)!

    • Andy McGuire profile image

      Andy McGuire 4 years ago from Los Angeles, CA

      I loved this. It's very personal and beautifully written. I hope to see more from you in the future. You have gained a loyal follower!

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you very much. Best of luck to you (and I hope you don't have an allergic reaction to the Gaviscon. I use magnesium daily. It helps with my almost daily headaches.) I can't publish Thrill Ride here because it has already been published, so:

      Thrill Ride (by Yvonne Decelis)

      It's a slow roller-coaster

      every day

      I feel my brain peel away

      now...

      layer by layer

      piece by piece

      it's much smaller

      now...

      than it was

      fifteen years ago

      everything is

      a little harder to do

      now…

      than it was

      ten years ago

      five years ago

      yesterday

      this morning

      now...

    • Pollyannalana profile image

      Pollyannalana 4 years ago from US

      I know I would benefit from magnesium but I have an allergy to it. I have found an acid medicine recently, (Gaviscon) that has it in it and I manage to tolerate that so maybe it will help. Well I am off to read your new hub. I will keep sharing your hubs to hopefully let others read you.

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Pollyannalana: thank you also for your suggestion to break this up into sections. I decided you were right and that is exactly what I will be doing from this point forward. Thanks again!

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you very much! I am putting this all into one because I plan on eventually having this published as a book. You are right though - maybe I should split it into sections. I agree re the fish oil (don't know a lot about apple cider but will check into it) too. That and magnesium (and something else called Pro-Biotiks Bio-35) have been my miracle-workers (along with LDN).

    • Pollyannalana profile image

      Pollyannalana 4 years ago from US

      I am glad to hear you use natural food etc to help with your pain. Fish oil and fresh apple cider are two miracle ones for me. I never go a day without those two. I have Fibromyalgia. I would look into the bee stings too if I had MS.

      If you turned this hub into two or three it would probably get read more, making the first one an introduction. People here really do care but most are pretty busy and can't give a long article as much attention and I would like to see you read. I will share this with my followers.

    • Yvonne Decelis profile image
      Author

      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Kate: I am sorry you have to deal with the "but you look so good" attitude and I definitely relate. I'm glad what I wrote is helpful and I plan to keep writing. Thanks so much for your feedback!

    • profile image

      kate collier 4 years ago

      Hi. Just want to let you know that I read your blog and really relate to what you have been through. It's been over a year now that I have been off Anonex -I just couldn't take the side effects anymore! I just take LDN now. I think it's helping? :) I try to stay busy with work and trying to stay creative, love my dogs and sleep whenever sleep lets me in! I have also lost a job over having MS, and felt many effects from friends and family concerning my capabilities... hey, you look fine so what's the problem, right? Must be laziness. This attitude has led to a lot of anxiety and depression. (sigh...) Anyway, thanks for listening and keep writing! I'll keep reading! Thank you again for shareing your story.

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you also to Karen Galley for your great info!

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you very much Allissa!

    • profile image

      Allissa Wilson 4 years ago

      Hi Yvonne, I just read your posts here and decided I would write to you. I was diagnosed with MS in MAY 2008, and placed on Copaxone but never got better, then Avonex, then Tysarbi, then methotrexate with high prednisone doses, then gilenya. My MS continued to progress very quickly, and all my MRI's showed new and active lesions in my brain and spinal cord every single time. I am writing to tell you there is HOPE!!!! I know because my neurologist told me that if I didn't get the Hematopoietic Stem Cell transplant then I wouldn't be alive much longer, and he directed me to Dr. Burt in Chicago for the clinical trial. Dr. Burt said I was too far advanced to be accepted for his trial. It was pure FATE that Carmel Turner from Australia emailed me back that same day, and asked if she could telephone me. I had researched her online and watched her videos of her transplant experience and emailed her asking questions. I also learned of a man named George Goss here in the USA that had the transplant too, and he has a blog. I would suggest you google George and read his blog. I had the transplant done on March 27, 2012 in Bangaore India. I returned back home to Arkansas on May 14, 2012 and had my MRI done in July. The MRI showed NO ACTIVE AND NO NEW lesions in my brain or spinal cord...none!!!! I had NEVER had a MRI show NO NEW OR ACTIVE LESIONS!!!!! My neurologist was happily stunned with my results. He hugged me and told me he was proud of me and thanked me for having enough courage to fight for this transplant and for going to another country to have it performed. I am sharing this with you because I want you to know that this is HOPE!!!! I am still recovering from the transplant, but I have a future now and I get to continue to be a mom to my 2 kids(13&23 yrs old) I still have all the damage that I had prior to my transplant, but I don't have any new damage from the MS!!!!! I would be happy to discuss this with you more if you are interested. I am on FB as ALLISSA LINDLEY WILSON, and I have a support group on FB2 called Allissa's Support Group. I hope you will research Carmel Turner of Australia, and George Goss because they have far more information available than I do, and they also have a group on FB called hematopoietic stem cell transplant for MS and other autoimmune diseases. You can email me also at allissaw1@hotmail.com (that is a one behind the W) I hope you will reach out to me because I understand how you feel. I too have CONSTANT UNBEARABLE PAIN, but the transplant is offering me HOPE of a day when I will NOT WORRY ABOUT MS ever again. Take Care!

    • profile image

      Karen Galley 4 years ago

      Hi Yvonne,

      I just read your story and realised I was nodding (in agreement), shaking my head (in agreement) and in general I understand all you are saying apart from the pain. I've been 'fortunate' so far in that I don't suffer with any pain.

      My MS began with optic neuritis when I was about 25. I'm not gong to write an essay - this is your platform - and your story is one I will keep up to date on. LDN didn't work for me and I have never been offered ANY disease modifying drug. LDN is far too inexpensive for it to be made available to those who may benefit. It's nothing but corruption and greed between the huge drug companies and governments worldwide.

      I've tried stem cell treatment which was all a con. If you type my name into youtube you can see an interview did a couple of years ago.

      I had CCSVI in May of this year and apart from crying from the pain when they tried to inflate my jugular veins it had no effect whatsoever.

      I want to try hemp oil next but I ujndersand it's expensive.. I can't afford to keep paying for treatment. Did you know that over here (UK) many people take LDN as a form of precaution (cancer) and also because it's an anti ageing treatment so maybe I should go back onto it!

      Finally on my Timeline there is a very interesting video on hemp oil.

      Apparently it doesn't just 'help' it CURES.....

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Note: I am the author of the piece being commented on. My mother left a fabulous comment (imo) up above but asked me to correct her statement about her "daughter-in-laws": she asked me to change that to "daughters-in-law."

    • profile image

      Jane (aka Yvonne's Mom) 4 years ago

      First of all I need to say how proud I am of Yvonne. She has dealt with this awful disease much better than I have. Instead of falling into the "why me" syndrome, she has decided to do everything possible to keep herself as healthy as she can. When she was first diagnosed I couldn't even talk about it with my husband. I made the mistake of reading online messages which were mostly from people with the most frightening stories to tell. Advice to the newly diagnosed: do NOT read listserv MS group messages. They are mostly from those with the worst cases and will only scare you to death. As Yvonne has said, each person with MS is different. Also there have been great strides in medication so there are actually things that can help now that didn't exist 20 years ago. I was there when the doctors told her that she "might" have MS. They also said that if she had to get it, the timing was good because the first drug for MS, Betaseron, had just been approved. Before that there was nothing.

      It also amazes me how many people have MS. I never knew until Yvonne got it. If I mention her condition to someone they always know someone (friend or family member) who has it. I have also experienced the 'hoof in mouth' person who will say, "oh yes, I had a friend who died from MS". I don't know why people do that. The same thing happened when my late husband was diagnosed with bone cancer. My neighbor said, "my mother had that. It's extremely painful". Not something you should say to someone who has just been diagnosed with a terminal disease. Since her diagnosis I have found out that sisters of both of my daughter-in-laws have it as well as two sisters of a friend. Also my paper delivery person has it. All of these people had it and I never knew because they "look fine".

      Anyway on to my story: I have severe chronic back pain. I've had it for ten years. It is soft tissue pain and there is no surgical treatment for it. I tried every type of medical and alternative therapy you could think of without success. It eventually caused my body to react with fibromyalgia like pain. I've been on pain medications and use a TENS machine for 9 years. I am in constant pain. I've had it for so long that I've learned to live with it. People look at me and find it hard to believe that I'm in pain. That has sometimes been a problem. When I explain that I can't do something because of my back pain people often look at me with skepticism because the pain doesn't show. Several years ago my chiropractor started giving me "cold laser" treatments which have helped reduce the pain by about 25%. It has allowed me to live a much more normal life, but I truly understand what it's like to have invisible pain. It stinks and I wish that they would stop saying they are going to find a cure for MS and DO IT!

      To those out there with MS reading this - Yvonne is a wonderful source of information and support. I know she would be happy to hear from anyone who might benefit from her help.

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