Multiple Sclerosis & Little Understood Symptoms
These are what take away mobility (walking).
Some of the earliest symptoms I experienced before my official diagnosis, present themselves in ways not easily understood. One of the earliest symptoms I experienced occurred during my daily walks. If you’re old enough to remember the comic strip, “Alley Oop,” you’ll remember that the characters featured a sort of cave people with huge legs and feet (I can’t say it was a favorite). I always imagined that those legs and feet weighed a great deal. During my daily walks, my legs felt extremely heavy, as if suddenly they were made of concrete, like the legs of ancient human ancestors. I knew that the feeling or perception was wrong, but I didn’t understand what this symptom meant. I found out much later that this indicated weakness in my legs. The sensation was so strange-feeling, even as I walked my usual distance at my usual pace, that it was hard to comprehend. I have never experienced this sensation again, even when I was aware of increasing weakness. Exercises can help fight against weakness, but there are no guarantees. I have some weaknesses that have never gone away; that is, nothing improves it. This is one of many symptoms that can eventually result in decreased mobility, meaning a lessened ability to walk
Another symptom that is baffling is MS fatigue. To a person with MS, she may do something she has done hundreds of times or more, such as turning on a vacuum cleaner to clean the carpeting. After five minutes of this, she may need to stop and rest. It’s very confusing if you have not yet been diagnosed. Even after a diagnosis, this type of unrelenting exhaustion is hard to understand, maddening, and especially difficult to even describe. Fatigue is probably the only symptom that is nearly universally experienced by most people with MS, even though every individual with MS has a unique course, and symptoms, with this chronic illness. I remember planning to meet a friend for dinner once. The restaurant was in an area with multiple other restaurants nearby, and parking and overcrowding were common. When I mentioned this to my friend, she casually replied that we could just walk to another restaurant if our first choice was full. This friend has known about my diagnosis for years, but this incident made me realize that she didn’t really understand much of what I was going through. I held my tongue, and decided that if we had to pick another place to eat, I would explain to her then that I was unable to walk to the nearest restaurant. This didn’t happen and I was glad we had our dinner with no issues: overwhelming weakness or fatigue.
There are other symptoms caused by MS that can really throw you off your game, so to speak. I’ll name a few and address them in later Substack posts. There’s dropped foot, spasticity, heat intolerance, sensory abnormalities and more. As I get older, some symptoms that would only occur when I was going through an attack or exacerbation, have become permanent companions, which is described as secondary progressive multiple sclerosis, or SPMS. I have noticed that some doctors don’t make a distinction between different subtypes of MS and say it’s all just MS. The subtypes are:
RRMS Relapsing remitting MS
SPMS Secondary progressive MS
PPMS Primary progressive MS
Decisions by neurologists as to the subtype a person has determine which treatments are available to people with MS. It can be painful if the person believes a specific treatment might greatly benefit them. A good neurologist will explain, using the best knowledge about treatments. Yet, explaining why and/or how a treatment helps is often unknown. Having MS is not for the faint of heart. As mentioned, I’ll try to cover more symptoms of MS soon, as well as more controversy about the subtypes. Thank you for reading.