There have been over 80 symptoms of MS identified. It can often go undiagnosed for years because so many of the symptoms point to other possible ailments. We estimate I had MS for at least 10 years and may be as long as 35 years before I was diagnosed.
Things like temperature extremes and other illnesses such as a cold, infection, or flu can cause a temporary worsening of symptoms. If worsening symptoms can’t be attributed to another cause then it is considered an MS flare, which is when the symptoms get worse and the disease progresses. When this happens a patient is typically treated with IV steroids to calm and slow the body’s attack on the nervous system. I have had to get IV steroids 3 times in the past year.
Below are some of the typical symptoms of MS and all symptoms I have experienced.
Dysgraphia is a term that refers to difficulty with writing. It is probably my most constant symptom. I used to have great handwriting. But now I usually can’t read what I write. I have often taken notes and then not be able to make out what they say. Thankfully I have a laptop, and I can still type well.
Muscle Spasms can be mild to quite painful. If you have ever had a charlie horse you have an idea of just how painful these can be at times. I often get them in my feet. The muscles spasm so tight that my toes end up stuck as if they are pushing up towards the sky. Lately, it is the large muscle in my back that will spasm.
URINARY INCONTINENCE, FREQUENCY OR RETENTION
Bladder dysfunction occurs in at least 80 percent of people with MS. It is a result of problems with the nerve signals in areas of the central nervous system that control the bladder and urinary sphincters. This can lead to a spastic, or overactive bladder that is unable to hold a normal amount of urine or a bladder that does not empty properly.
To help manage an active bladder I have a prescription. It is not uncommon for people with MS to have to self-catheter to help remove urine from a bladder.
DIFFICULTIES WITH COORDINATION AND BALANCE
Many people living with MS are afraid they will get pulled over and asked to walk a straight line to prove they are not drunk because they often have difficulties with coordination and balance. Not because they are driving like a drunk, but because most of us would not be able to walk a straight line with one foot in from of another. I can’t do it anymore, and I used to be a very coordinated dancer.
For a few years before my multiple sclerosis diagnosis, I began cutting people off all the time walking in crowded places. I am constantly cutting people off when I walk in front of them as I zip and zag back and forth.
I also fell down a lot. A few years before my diagnosis I fell 3 times in one day and 7 times that week. I didn’t know it then, but I was experiencing an MS flare at the time. It was not helped by the fact that I was also dealing with some herniated discs in my lower back and neck. That just aggravated the issue.
Cognitive impairment occurs in 40-65% of multiple sclerosis (MS) patients. It typically involves attention and concentration, processing speed, and memory. Thankfully mine is usually not too bad. But we won’t talk about the day I forgot my husband’s name and the one day I had to look at my business card to remember the name of the company I worked for. Fatigue made a huge impact on those days, but MS was the primary factor. This symptom is one of the things I fear the most.
TINGLING, PINS AND NEEDLES OR NUMBNESS
I have constant tingling in my right hand. But other parts of the body will often feel like they are asleep. The weirdest one for me is when my butt goes to sleep. Yuck!
MS HUG (DYSESTHESIA)
An MS hug was one of the first symptoms I experienced and one of the reasons we suspect I had MS for close to 20 years before being diagnosed. Imagine a blood pressure cuff tightening around your waist. My ribs so often hurt as if someone had them in a vice. I don’t experience this symptom as much as I used to.
Dysarthria is a speech disorder in which the muscles that are used to produce speech are damaged, paralyzed, or weakened. With MS the demyelinating of nerves can lead to spasticity of the vocal cords, slow speech and difficulty coordinating the lips, vocal cords, tongue, and diaphragm. The person with dysarthria may often slur words. It tends to show up with me quite often when I am tired.
Dizziness is a common symptom of Multiple Sclerosis. People with MS may be lightheaded or feel off balance. Some experience vertigo, and have the sensation that they or their surroundings are spinning. These symptoms are due to damage done to the neural pathways that coordinate one’s visual and spatial put to the brain. Research has shown this type of reaction often responds to motion sickness meds.
I experience dizziness frequently when turning my head. This leads to feelings of nausea. For years, before being diagnosed, I told the doctors that motion sickness meds helped my nausea. Several of them told me that wasn’t possible. It all now makes sense.
When nerve fibers are damaged by MS the brain can’t effectively send signals to the muscles telling them to flex or contract. As a result, these muscles won’t remain strong due to use. Many people experience weakness because the pain keeps them from being active as much as they used to. Nerve signals to the hands may cause them to not work as well as they used to.
Don’t expect me to open those hard to open jars. It likely isn’t going to happen.
Spasticity is a muscle control disorder. It leads to tight or stiff muscles and an inability to control those muscles so they relax. This leads to stiff muscles. Spasticity can interfere with movement, speech, or be associated with discomfort or pain.
UHTHOFF’S PHENOMENON & HEAT INTOLERANCE
Because MS damages the protective sheath around nerve cells in the brain and spinal cord it can slow down the nerve signals. These nerve signals tell your body how to respond to heat. When that signal is disrupted the body doesn’t always respond the way it should to heat. And heat can slow these signals even more.
MS can also affect the part of the brain that controls body temperature leading to overheating. A few months before I was diagnosed with MS I ended up being taken to first aid after nearly losing consciousness at a football game due to the heat. The event staff found me laying on the ground after I nearly passed out. I am now super sensitive to heat and can go into heat exhaustion quite easily.
Numbness, especially in the face, body, arms and legs is one of the most common symptoms of MS. It is often the first MS symptom people with multiple sclerosis will experience. The numbness is diminished or lost, or altered sensation. It can also present as a body part being “asleep” with a pins and needles sensation.
One thing people will hear form others who don’t have the disease is, “I get really tired too.” But the fatigue we are talking about here is so extreme is not a feeling of extreme tiredness. As in I got to sleep right now and I don’t care if I ever wake up because it feels like I need to sleep for the rest of my life because I am that tired.
Luckily I get this “extreme” fatigue not very often. And when it hits all I can think about is “I’ve got to sleep right now.”
One day I was up in the mountains and had one of these extreme fatigue moments. I just laid down, right there on the dirt, in the middle of no where, and slept. It scared me because no on knew where I was. I was within eye site of the camp, but I was the only one in camp when this hit and I laid down among the shrubs. I thought I may never wake up, but I couldn’t walk another step until I slept.
I keep a yoga mat in my office and have had to take a power nap a few times when this extreme fatigue hit. I could not function for one more second before sleeping for a bit.
I have also been known to get a hotel room close to my office when I could not make the drive home due to this fatigue. Even though my office was 50 minutes from my home. At other times I will pull over and sleep in my car a bit. Safety first. This isn’t like narcolepsy
I now have a med, typically prescribed for narcolepsy, which really helps on those days I experience extreme fatigue.
DYSESTHESIA (ELECTRICAL SENSATIONS)
Dysesthesia is pain and strange sensations due to sensory nerve damage. Incorrect signals from the nerves can cause your brain to stimulate strange sensations. These can include throbbing, aching, stinging, burning, electrical shock-like sensations, shooting pains, a feeling like your muscles are tearing apart, and that icky skin crawling sensation.
I most often experience electrical shocks. It feels like I have bumped into a low voltage electric fence. Or I will feel an electric shock start in one spot in my body and travel to another.
We have all probably experienced an itch that won’t go away. For people with MS that itching can be a constant companion for weeks at a time or often much longer. Mine is usually my scalp. Before I was diagnosed I even treated myself 3 different times for lice because I couldn’t figure out any other reason for the itching. We didn’t see any lice and obviously, the lice treatment didn’t help, but I felt better knowing I was doing something to maybe solve the constant itch.
The National MS Society believes it may be a reaction to something in the environment as people with MS are more susceptible to those factors. It could be. I know I am very sensitive to outside factors. But I am not sure if that is what triggers it in me because I can change my environment and the itch still persists.
BOWEL INCONTINENCE, DIARRHEA OR CONSTIPATION
Yep. MS causes issues with the bowels. These bowel symptoms can often prevent people who deal with MS from participating in many activities. I know for me that has often been the case. It has often prevented me from attending events with families and friends.