MSguided Bits

My brain is like a maze with sections obscured by lesions- attacks of a malfunctioning immune system.

I began my life being called Elizabeth. When I was a baby, my toddler brother could not pronounce the complicated name my parents chose. It came out “little bit.” At five, being called Little Bits, Elizabeth, Bits, Bitties, Little Bitty Bot, Little Bibby Pie, and Infrabit daily, I finally confronted my mother and asked her, “What is my name? Jonny’s name is Jonny, Jimmy’s name is Jimmy, who am I?” She told me that my name is Elizabeth Rhianna, and all the rest are nicknames. I said I wanted to be called Rhianna because it sounded like a princess name. After that she always called me Rhianna, but I still was called every variation of Bits under the sun. I go by Elizabeth now, but I don’t care what people call me. I want them to have their preference rather than mine, so you can call me any of the above; just don’t call me Liz.

I have been living with the chronic disease of Multiple Sclerosis for 15 years. I was diagnosed right after I turned 20, but I experienced symptoms in my early teens. The process of Multiple Sclerosis is autoimmune system gone awry. I call it a process because that process usually has begun long before diagnosis, the immune systems T and B cells becoming misguided and attacking the fatty insulation that coats the nerves of our brain and spinal column. That coating, the myelin sheath, surrounds the nerves in much the same way rubber and plastic coats the wires that charge our phones. When the myelin sheath is worn away, the signals no longer work as they are supposed to, which leads to a wide variety of neurological misfirings. No one person’s MS is exactly like another person’s; everyone gets a custom brand of MS just for them. MS is a unique process which is one of the reasons doctors struggle to understand how it happens and how to best treat each person’s illness. The first line of treatments for MS are Disease Modifying Treatments, or DMTs. Often there is a process of trying a DMT, if a person has a relapse it’s ineffective and treatment is altered , if the disease remains in remission usually it’s recommend that the person stay on their prescribed treatment . The process of the disease I am describing is the one I have, Relapsing Remitting Multiple Sclerosis, RRMS. This is a process of disease activity with new symptoms occurring or old systems worsening (a relapse) followed by the immune system calming down and all or some of your symptoms going away, or going partially away (remission).

The are three other types of MS, Clinically Isolated Syndrome (CIS), Primary Progressive MS (PPMS), and Secondary Progressive MS (SPMS).

Clinically Isolated Syndrome  occurs when there is one episode of inflammation or demyelination in which symptoms last 24 to 48 hours. If a MRI detects a brain or spine lesion there is an increased  chance that it will progress to RRMS in the course of a few years. If there are no lesions detected the likelihood is reduced.

Primary Progressive MS is the most aggressive form.  Instead of relapses and remissions, there is a steady progression of lesions, demyelination, and disability.  That doesn’t mean people need to give into a slow inevitable decline. The first woman I met with MS, after my diagnosis, had PPMS and though she had lost the use of her legs and was in a wheelchair, she went to the pool several times a week to swim and the defined muscles of her arms showed her strength.

Secondary Progressive MS is the progressive form that frequently develops after a person has experienced  RRMS. There may be periods of relapse and inflammation with steady periods (of what) in between, or there may be gradual demyelination and decline in abilities.  I am still categorized by RRMS, but part of me has to wonder how long will I remain in this phase. I had to fight my way out of my bad relapse in my early 20s, and I never completely recovered.  With my most recent relapse, a lot of the problems I had experienced returned, along with a worsened gait, more fatigue, more cog fog ( cognitive problems), and tingles and numbness in legs, hands, feet and arms that doesn’t go away.  I am six months into this relapse and giving it everything I have.

What has helped me to start recovering from this relapse has been a shift of focus from the I, my MS, to the we, our MS.  I have been active on a chat app called MS Buddy since the start of my relapse in Oct 2018.  I have connected with such wonderful people going through similar disease processes; they are still functioning and living life.  Going through this together is so much easier than going it alone. However MSers invest time, money, and our oh so precious limited energy trying to find ways to help us function. It takes so much energy to find answers when the answers we get from our neurologist and our Disease Modifying Therapies aren’t enough to manage our symptoms. If we have a network of others to draw information and advice from, we don’t have to try to do it all on our own.

Alone we are defenseless against this disease, but coming together we can share the therapies, alternative medicines, treatments, diets, exercises and anything else that can help us through this.  I’m an ambassador for MS Buddy.  If you need some help there are three other ambassadors and a wonderful Guide named Kathy.  This app seriously saved me. Coming together is the only way to combat the crippling isolation that comes with Multiple Sclerosis.

Let’s trudge on, and not lose hope.  We can’t afford too. If we lose hope the encroaching forces of MS will win. We need to resit the despair that could lead us to giving up. At all costs we’ve got to avoid walking, or riding into that minefield of increasing disability- {shoot, that one took my left arm, that one blew out my right eye, shit, that one took out my belly button!}

My motivation for this blog is to share the knowledge I have gained, all the stuff that has worked and all the stuff that hasn’t over the last 15 years of struggling through.  I hope you find something of value here. I am not a medical professional, my BA is in social/cultural anthropology. The knowledge I have gained has been through research and trial and error.  If someone can find value in all this hell I have come through, the “Bits” of knowledge I have gleaned, then I can give all this meaning and purpose. So let’s begin…

8 thoughts on “MSguided Bits

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  1. Great blog! Don’t you wish you know now,way back when? It’s impossible to go through MS alone. Unfortunately I have a sister and an uncle who also have variying degrees of MS. My uncle and myself have PPMS, and my sister has SPMS. We have doctors who say it’s environmental and others who say it’s genetics,but as far as I know, none of them are quite sure. Wish I could find a place that would want to do a case study on us, considering we all grew up in the same house at different times. Doctors try to lump us in with autoimmune diseases,but the vast majority do not pass the blood/brain barrier. Keep me up to date and let me know any new information, please?


    1. Thank you! I do wish I had more understanding back then, but when I was diagnosed, 2004, information was a lot fewer and farther between. Even more, I wish I had access to this wonderful community we find ourselves in now, with exchanges in information.
      You might try contacting Dr. Brandon Beaber. I don’t know that he is conducting any case studies, but he is an excellent MS Specialist that responds to questions from the community, and perhaps he would know of someone. (@Brandon_Beaber on Twitter)
      So sorry that you all have it. I’m the only one in my family, but we have lots of autoimmune disorders in my family.
      I will keep you up to date. I’m working on a blog about a medication in development that looks like it will be moving on to phase 2 clinical trials. It was in animal models when I was first diagnosed with MS and I’m very excited to recently find out it is still in development. 🤞🏼


  2. Remember that Infrabit is related to the Japanese movie Inframan. You’re a superhero who used to fly around and protect your brothers when you were a baby. Good to see that you’re fulfilling you calling in life working to make a better world.


  3. Remember that Infrabit is related to the Japanese movie Inframan. You’re a superhero who used to fly around and protect your brothers when you were a baby. Good to see that you’re fulfilling you calling in life working to make a better world.

    Liked by 1 person

  4. I saw you on Damian’s LIVE today. Love your vlogs,very transparent and I can identify that I get worse and no lesion to correlate. It’s like doctors don’t believe you! Keep blogging!

    Liked by 1 person

    1. Thank you AJ! I’m so glad you enjoyed! Do you see an MS specialist? That used to be my experience and it really messed up my psyche when I was in my early 20s, had a diagnosis and still thought it was all in my head. Lol
      My current doctor says that they were legitimate relapses and they don’t really understand why disability doesn’t always correspond with lesions!


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