March MS Awareness month

DISCLOSURE:

I want to fully disclose that if you find errors or typos, I can no longer type correctly. My fingers land on different letters, or I might have a tremor that affects what I try to type.

So..... I threw my dart at the target and unfortunately it landed in the......outer circle (not the bull’s-eye). My goal had been to write and post this blog monthly. Before MS, I probably could have achieved the goal. Unfortunately, now, I have learned that I may think I can do something, but it’s not the same way my thoughts imagined. This isn’t a FF time. I have done this with other things, but I guess I still have some learning to do.

What I wanted to talk about in this episode was my diagnosis with my MRI. It was shared with me by the neurologist that I have approximately 20 scattered lesions. The neurologist was not willing to say exactly what I could expect, and that makes sense. The NIH has posted that “The brain consists of the cerebrum, cerebellum, and brainstem.  Taking up the majority of the brain space is the cerebrum. The cerebrum is divided into the left and right hemispheres by a deep “fissure” through which the two hemispheres remain in contact and communication with one another.”  The cerebrum covers lobes which consist of:

FRONTAL LOBE    PARIETAL LOBE    OCCIPITAL LOBE    TEMPERAL LOBE

My MRI report found the following (remember I have approximately 20 scattered lesions):

FINDINGS:

VENTRICLES: Normal for age.

CEREBRUM: There are some scattered T2 hyperintensities within the periventricular and deep white matter bilaterally measuring up to about 6 mm in size some of which are pericallosal in distribution. Several of these are also seen in the corpus callosum. These appear stable in number, size and distribution when compared to prior. No focal enhancing lesions are seen to suggest an active process 

CEREBELLUM: Linear T2 lesion in the low LEFT cerebellum similar to prior 

BRAINSTEM: Mild patchy increased T2 signal within the LEFT pons, unchanged 

CALVARIUM: Normal for age. 

HEMORRHAGE: None detected. 

VASCULAR LESIONS: None identified. 

PITUITARY: Not enlarged. 

VISUALIZED SINUSES: Clear

ENHANCING LESIONS: None.

 OTHER: None.

Each lobe is “wrinkled” or bunched up.  As far as I am concerned, the bunching of the lobes can make it more difficult to know what each lesion is affecting.

As I looked at the different lobes and functions, I used both (before MS) left and right sides of the brain. I have highlighted different areas on the pictures I share:

Currently, I have many of the following symptoms (again I have highlighted areas):

       

BALANCE:

I have partial left sided paralysis. I look like a zombie when I walk. 

BEHAVIOR/EMOTIONS: 

I am now a crier when I didn’t used to be. I also experience depression & anxiety that I don’t understand.

BODY TEMPERATURE:

I often say my thermostat is broke, I have a difficult time maintaining a certain temperature.

ALERTNESS & SLEEP:

There are times when I can’t sleep. I may go near 24 hours without sleeping (then I crash).  I also experience moments when I don’t have any initiative (lassitude).  I “think” or I “want” to do certain things, but I just can’t get up off my arse to do them (a monthly blog would be one example). 

DIGESTION:

I have many problems with my digestive system. Examples include constipation, difficulty passing food from my stomach to my intestines and bloating. Have I had an ultrasound regarding this? No, I have not, I just know what I feel. 

SENSATION:

There are moments when anything touching my skin is uncomfortable. For example, clothing may hurt, discomfort of a certain skin area that I don’t understand, occasional itching in a certain areas which I can’t predict where it will happen.

Although I share pictures and describe symptoms, ​that I experience, it’s not ​"the whole picture". I don’t remember many things.  Examples of things that I don’t remember include skipping, riding a bike, walking normally or running. I will never say that MS is great. But I will always try to strive for the knowledge that I have gained “I have gratitude and I am thankful for the joys that I get to experience” 

                      

2025

I spent my time in 2024 starting this blog and reviewing how MS has impacted me. As 2025 begins, I will alter my path to review in more depth: treatment/health options, science/study information, research opportunities & other topics that may come forward. I hope that you will accompany me as this journey continues.  This blog is not intended to be a method to “talk at you”, rather a way for us to talk as a group. For myself, I may watch videos, attend virtual conferences, attend support groups, read an article et. but I will often quickly forget what was shared afterwards. MS affects me in that way, what is often referred to as “cog fog”.

I am using a blog because it's an opportunity to look back on what was discussed here. Also an opportunity for you to share if you want to do that. Also others may see what you have learned or tried.  We are here to share, not to dictate, not to judge but we can support one another.  We can become a tribe for one another.

So here goes:

Per the NIH (National institute of Health: nih.gov) Multiple Sclerosis (MS) is described as a chronic neurological autoimmune disorder (condition). Our immune system is typically supposed to protect us from viruses, bacteria, and other threats.  However, when someone is diagnosed with MS,it means that the immune system has started to attack our own healthy cells. 

In MS, the immune system attacks the myelin sheath of the central nervous system (brain & spinal cord). Myelin is a mixture of protein and fatty acids that makes up the protective cover that coats nerve fibers. 

                           

The central nervous system is a very large part of our body.  Because the immune system controls/affects so much of our body,

MS (think scar) affects everyone differently.  There are some common symptoms of MS which show as:

• Vision problems, such double vision or optic neuritis (inflammation of the optic nerve), which causes pain with eye movement and vision loss

• Muscle weakness, often in the arms and legs, and muscle stiffness with painful muscle spasms

• Tingling, numbness, or pain in the arms, legs, trunk, or face

• Clumsiness, especially difficulty staying balanced when walking

• Bladder control problems

• Intermittent or constant dizziness:

• Mental or physical fatigue

• Mood changes such as depression or difficulty with emotional expression or control

• Cognitive changes, including problems concentrating, multitasking, thinking, or learning, or difficulties with memory or judgment

Unfortunately, there is no cure for MS. There are several treatments (medication, foods, activities) that reduce the severity or long-term progression of MS.

In a presentation I viewed with Dr. Boster on MSVN (https://msviewsandnews.org ), it was mentioned that scarring that occurs primarily on the spinal cord may affect primarily the function of the limbs (hands, feet, arms, legs and trunk.).  Scars that occur on the brain will affect people in many other way.(such as how I am affected: information process, memory, mental health issues such as depression/anxiety) in addition to what you may experience with spinal cord “scars”.  I may be recounting this incorrectly as I may not remember correctly what I have viewed.

Again, since MS can affect so many areas of our life, there is a large amount of research and studies for MS.  The research helps to learn more about the effects of MS, treatments for MS and new knowledge about MS.  There is an opportunity for people with MS to ask about things that are important individually for study consideration.  It is called “People Powered Research”.  IConquerMS (https://www.iconquerms.org) is the leader in this area.

I am getting tired and starting to make more errors.  Until February (TY spell check)

MS & the FFT ....

I learned about FFT when I listened to a podcast talking with Dr. Brene Brown PH.D.  FFT actually stands for F*#@ing First Time however I will refer to it as the "famous first time."

We each have experience famous first time with something. Maybe:

• Riding a bike

• Driving

• Having a child

My “Famous First Time” that will stay with me the forever will be my diagnosis of MS.  Little did I realize that MS was a forever condition. I didn't have any information, knowledge or understanding about MS. After I

began to learn more, I had questions:

• What does having MS mean for my life?

• Why did I get MS (did I do something wrong?)?

• Will I need to stop doing things I have loved? (reading, riding my bike, "nerding")   

The concept of “taking back my power” was discussed by Dr, Brown during the podcast. I realized that MS had power over me. I overrode choices that I wanted to make. For example I couldn't ride my bike since I had lost my balance. Typing this is difficult since my left had is numb and i hit the wrong keys (be aware if I type a foul language word... its because of my left hand neuropathy & my inability to type on the right key consistently. However I leaned from the podcast with Dr. Brown I was giving MS power by trying to hide from it.  If I said the word multiple sclerosis and accepted that I needed to change my life, who I used to be was gone, then I would taking a small step to making my power mine again ( I was going to get back some of my power from that 💩). Calling “out” MS would help me regain my ‘power”.  It helped….kind of…

I was able to gain back power by:

• Talk to others with MS (support groups)

• Learning about MS through reputable sources such as:

MS Views and Views

National Multiple Sclerosis Society

Neurologist 

• Advocating for myself 

           How I wanted my treatment

Who and where I wanted to receive treatment from

 

Martin Luther King shared that: power is the ability to affect change and achieve purpose.

The FFT isn’t easy. Affecting change and achieving purpose involved several steps:

• Reality check of MS

• Perspective of the new me with MS

• Expectations about who I was now and who I used to be (maybe I should have said "realistic expectations").

My reality check was that I had MS. There was not a cure for MS.  I didn’t know what MS would do to me...tomorrow.... in 5 years or in10 years. I considered the "Shawshank Redemption", I needed to get busy living or get busy dying. 

Perspective was learning the normalization of my new life with MS. I had “normalized"  once before in the past. That encountered in grade school (and partially through Jr. High). I had Myopia, also called nearsightedness.  I couldn’t clearly see beyond 5-10 ft ahead. I couldn't see what my teacher wrote on the blackboard (yes I am “older” and blackboards were still used).  I didn’t know I was nearsighted. No one had ever discovered or told me that I may have a problem with my vision. It wasn’t realized by my parents or teachers.  I thought my vision was the same as other kids.  I learned to feel normal with myopia until it I was finally diagnosed when I was 14. I received prescriptive contact lenses.  I learned that I had ”normalized something that wasn't "normal”.  Other people actually could “see”. They didn't need glasses or contact lenses. What I thought was normal vision was actually nearly blindness, that is how bad my vision was. "W O W"! 

How would normalize MS? I was out of practice. I received my diagnosis at 42. How would I achieve what I had done when I was a grade schooler?  What would normalizing MS that look like?  I couldn't get a pair of lenses and make everything ok. Could I normalize MS?  What I have since learned is that MS isn’t the same for everyone and it isn’t the same treatment for each person. 

In regards to expectations, is there anything other than “expect the unexpected”?  MS, as I mentioned before, is different for everyone. The only thing that is the same for each person is the experience of the “FFT” of diagnosis of MS.  A funny thing with MS, you have the experience of going through the FFT over and over again.  For example, for myself, I went through falling:

I also had the opportunity to become depressed, be fired from a job, lose my speed of cognition, and oh yeah, TYPE. Someone smart once said that expectations are resentments waiting to happen.  For myself, I consider that expectations are disappointments waiting to happen.  I can no longer:

• Run

• Skip

• Ride my bike

I decided that I might be scared of FFT’s BUT I won’t “suck” at every FFT.  Rather I will learn how to do workarounds or hacks to cope with FFT’s.  I have another FFT.  I started this BLOG.  I am learning as I go as MS affects my ability to process information (cog fog). I may have MS, but I choose to get busy living, if I don’t to anything I will be getting busy dying.

Discovery & Reactions

Many would think that as a nurse, I would have been more aware of changes that were happening to me. However, I was a busy woman. I was a mother, caring for two children. I was a wife caring for an amazing husband. Finally, I was an employee working full time on night shift. I didn't have time to notice anything about myself.  As Laura K. stated during a podcast she "pushed through all sorts of things” as did I. If I did notice something I figured I could explain it away. For example, when my left hand was numb, I would self-diagnose that I had carpal tunnel from using the computer too much at work.   

The things that I mentioned above, occurred approximately 15 years prior to diagnosis. During 1 episode in 2007, I experienced one of the three most common symptoms mentioned by Dr. Boster, optic neuritis. I was partially blind in my right eye. Of course, my self-diagnosis kicked in and I attributed this symptom to TMJ. I was experiencing a lot of stress (new job, long move, rural to urban...). I decided that I was grinding my teeth which affected my eye. Now, feel free to judge me. I realize that I made some significant assumptions about myself. Although I did go to the eye doctor. The eye doctor said he didn't see anything wrong. I decided to just "push through it". It resolved about a week later. 

The National Institute of Neurology has posted that the first symptoms of multiple sclerosis include: 

• Vision problems  
• Muscle weakness 
• Tingling and numbness  
• Clumsiness (Such as difficulty with balance when walking) 
• Bladder difficulty 

• 
  

As I neared my diagnosis, I was experiencing nearly all the symptoms listed above. Another podcast that I listened to shared “when your legs or arms work but then they suddenly don't work - It's time to go see a doctor, something isn't right".  I spent so much time making excuses that I prolonged my diagnosis. Roughly 20 years, call me a procrastinator... 

Brooke Eby recently spoke on the podcast MeSsy.  She is 35 now but when she was 29 she started limping. She was not a procrastinator like myself. She went to the doctor. She tried physical therapy, stretching, and working out.  The doctor she went to thought she had pinched a nerve. She went through several tests such as X-rays, cat scans and MRI's.  She was not diagnosed with MS. At 33 she was diagnosed with a different devastating diagnosis, ALS or also known as Lou Gehrig disease. 

 

I was diagnosed with multiple sclerosis in 2012. The symptom that I couldn't make excuses was cognitive impairment (also called COG FOG). As a nurse, it is very, very important to have the highest ability to think. It is very important for a nurse to “First do no Harm”.  I was nearing the point that I could make a mistake and do harm.  I also noticed that:

• I was not a person who cried but I suddenly cried about everything.
• I was a person who had an easy laugh but suddenly was angry
• I had a mixed drink 1-3 times per month but I began drinking 3/4 of a fifth of vodka in 1 night

After seeing several providers, (one told me I needed to undergo surgery to remove my gallbladder) I was finally referred to a neurologist. 

It has been recommended often that a person should take someone to the neurology appointment.  I have to wholeheartedly agree with this advice.  My husband accompanied me to my appointment. He shared things that I was going through that I didn't take into consideration. He could see me clearly. He saw the changes that were happening. The neurologist took my history, did a physical exam and ordered a MRI of my brain (with/without contrast). EVERYTHING (the history, physical & MRI) had abnormalities. The MRI showed approximately 20 scattered lesions.

Kathy, another person who I listened to on a podcast stated "don't ignore your body". I wish I could say that I 100% follow that advice. I acknowledge some things, self monitor others & ignore some. What I have LEARNED is to know my own body. I have learned methods to help my body. I cannot say that I adhere perfectly to all I should do. If I did a report card on myself I would give myself 75-80%.

I have recently begun to listen to the podcast MeSsy with Jamie Lynn-Sigler and Christina Applegate. Jamie stated that when she was first diagnosed with multiple sclerosis, she was overwhelmed, in denial and resisted acceptance of her diagnosis of MS.  Guess what, I was also in that same place. I shared with my daughter, “just treat me the way you've always done, it's not a big deal”. 

Jamie shares in her podcast that she wishes she would have started thinking about her needs sooner. It would have helped her to get to a place of acceptance and finding the right treatment choice for her earlier. In the end or finally, I had to accept that I had multiple sclerosis. It's important to realize that just because you accept that you have multiple sclerosis, it doesn't mean that that you have to enjoy it or like it. 

It has taken me 12 years to be at the place I am now. I can live with the new me. It was a very difficult journey the for 12 years. There were a LOT of potholes on my road. Occasionally I still "trip" on one of the potholes. Some may find peace and a way of life earlier than I did. Even though it has taken me 12 years, I think I finally understand where I am at now. 

“the credit belongs to the man who is actually the arena the, whose face is marred by dust and sweat and blood who strives valiantly;... if he fails at least fails while daring greatly” 

Teddy Roosevelt 

 Those of us with multiple sclerosis and the people that stand with us are in the arena. We are marred by dust and sweat and blood. But we are there and those who are not there should not or cannot comment/voice on the new person we are becoming.

Who am I? I am me. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

9