The Lonely Life of Odd Multiple Sclerosis Symptoms
If there is one thing that makes the multiple sclerosis community strong, it is our ability to empathize with one another. Our various struggles and triumphs can be shared with people who know what we go through. This is a wonderful benefit, and often the focus is on the most prevalent symptoms. When looking up multiple sclerosis symptoms, what usually comes up are fatigue, difficulties with gait or walking, tingling/numbness, vision problems, weakness, dizziness or vertigo, and tingling/numbness.
I am the odd one out
Since my diagnosis came out of the blue, I was left confused since I had not, yet, experienced these things. I had to do research after the fact and what I found was that I was a multiple sclerosis odd duck. I had rare multiple sclerosis symptoms that affect a small number of multiple sclerosis patients. When I join in the occasional comparison session, I am the odd man out at times. When your MS manifests itself in strange ways, it can be a lonely life.
Many people with MS commiserate together about heat intolerance
When discussing living with MS, we can identify with things like heat intolerance. As summer settles in, the complaints about worsening symptoms are a popular topic. Many of us cope with impaired thermoregulation that results in temperature sensitivity that comes with hot or cold weather. Stories about needing air conditioning in the heat or extra blankets in the cold are met with other stories or helpful hints on dealing with it.
I experience excessive sweating
While I can contribute to the conversation, my form is a bit different. My body decides when it is hot and that I need to sweat. And sweat I do. One time it was so bad the clerk at the convenience store offered for me to stick my head in the freezer to cool off. Yes, it is that bad. However, it comes and goes without any rhyme or reason. I've only met one other person who had this problem. That is a common theme for me.
I didn't have the typical MS symptoms
After I found out that I had multiple sclerosis, I was gobsmacked. I could not for the life of me think of a time when I had gait or balance issues. I can still balance on one foot for a very long time. I wear glasses, but my biggest moment of despair was getting bifocals. I never experienced vertigo. In order to find out that I did indeed have symptoms, I had to become a detective. A multiple sclerosis symptom detective. William Murdoch has nothing on me.
Researching my rare symptoms
I created the search engine shortcut "multiple sclerosis and". I would then fill in any physical problem I had after the word "and". As I leaned into research, I learned that there exists a decent amount of information on my issues. It was just that they were rare. How rare? Less than five percent rare in one case and one to three percent in another.
Ringing in my ears
I had occasional ringing in my ears off and on for as long as I can remember. I knew about tinnitus from the public service announcements on the radio. I just never thought it applied to me because it wasn't constant. It was only after scrolling through bulletin boards did I realize that it is an MS symptom for five percent of our population, and I had it.
Trigeminal neuralgia or my "sparky jaw"
However, it was three years after I was diagnosed that I learned my quirky little jaw pain was actually trigeminal neuralgia, a painful jaw condition. "While it is well recognized in the context of MS, trigeminal neuralgia occurs infrequently, with a prevalence of 1–3 % of patients with MS."1 Again, a rare symptom. I found this one by using the term "sparky jaw". I thought I made it up. Apparently not, because I found what I was looking for.
Feeling like my hurt is unrelatable
I don't blame researchers or multiple sclerosis organizations for not making my issues prominent. At three to five percent of the MS population, they can hardly be the focus. At the same time, it is sometimes disheartening to know that what pains you does not pain others. That my hurt is 95% unrelatable. So, what do I do with this knowledge? I do what we all do. Live my best life. Barak Obama said, "The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope."
How I find my hope
I find my hope in helping others with multiple sclerosis. I advocate for research inclusivity through my work with iConquerMS and the MS Minority Research Engagement Partnership Network (MS MREPN). I find hope in my role on the Board of Directors for STRIDE, a 501(c)(3) Federally Qualified Community Health Center (FQHC) that serves over 700,000 Coloradans. I find hope in giving hope because it is with that belief in a better future where the spasticity, that presents in my only in my arms, can be helped. One where my rare symptoms can be cured along with those that are most prevalent.
How many specialists did you see before finding "The One"?