I love living in a world where I can Google anything, and instantly have an answer at my fingertips. It especially comes in handy when you are living with a disease like MS, which loves to throw curve balls at you constantly. You can turn to the internet and find pages and pages of information about symptoms, medications, and even browse forums of other people living with MS trading information and experiences.
Almost every informational MS site you visit has loads of information on the common symptoms like numbness and optic neuritis but what about the other lesser-known evils of MS? You may find a stray article here or there, but there simply isn’t a lot of information on some of the rarer MS symptoms. Suddenly even in a sea of endless information, you may find yourself stranded on a seemingly deserted island left wondering- “is this an MS symptom” or “am I the only one who experiences this”?
I think we should start a conversation about these rarer issues, so I went ahead and started a list for us. Some of these are known to be associated with MS, while others are not so clear-cut. My hope is that you will all share your experiences, and let someone else out there know that they are not alone.
Named for the French neurologist Jean Lhermitte, this is an electric sensation that runs down the spine when the head is bent forward. Sometimes the sensation also goes into the limbs, and it ranges from feeling like a tickle to an extremely painful phenomenon.
A lesser known relative of Trigeminal neuralgia, glossopharyngeal neuralgia is irritation of the ninth cranial nerve. It causes extreme shock-like pain in the back of the nose, throat, tongue, and ear. It can be triggered by chewing, laughing, coughing, talking, and swallowing.
Pseudobulbar Affect (PBA)
Sometime referred to as “emotional incontinence”, PBA is characterized by inappropriate and uncontrollable episodes of laughing or crying. A person with PBA may cry even when they don’t feel sad, or laugh without having any reason to.
It’s not uncommon for people with MS to have funny sensations like tingling, numbness, burning, or pins and needles. Itching is considered a more rare form of these funny feelings, known as paresthesias.
One of the most rare symptoms of MS, hearing loss is usually caused by a lesion in the brainstem that affects the auditory nerve which is responsible for hearing.
People with MS are about 3% more likely to have a seizure as a result of brain lesions. It is important to immediately seek medical attention, and alert your health care provider if you think you have had a seizure.
A temporary worsening of symptoms that occurs with exertion or elevated body temperature which improves with rest or after cooling off.
Problems with Speech
Speaking is a very complex task that requires the input from several areas of the brain. MS lesions can cause slurred speech, and can alter the tone and cadence of one’s voice. Some people experience a very nasally voice, which makes them sound like they have a cold while others have to take abnormally long pauses between words or while talking.
Tremors, or shaking movements, can occur virtually anywhere in the body including the hands, legs, vocal cords, and eyes. They can lead to difficulty performing fine motor tasks (like eating, drinking, and writing), visual difficulties (blurred vision and/or dizziness from jumpy eye movements called nystagmus), difficulty speaking, and difficulty swallowing.
The “MS Hug”
Although this symptoms sounds kind of warm and fuzzy, it’s anything but. It is caused by spasms of the intercostal muscles, located between the ribs resulting in a squeezing pain around the torso. It is sort of like a full body charlie horse that can range for being merely annoying, to extremely painful.
Trouble Swallowing (Dysphagia)
Although it is more common with advanced stages of MS, trouble swallowing can occur at any time. This may cause coughing after eating or drinking, and can even lead to choking.
Hyperacusis is extreme pain caused by everyday noises. A person can suddenly become extremely sensitive to everyday noises, leading to a fear of sound. This is rare, but understandably can be an extremely isolating symptom.
Sensitivity to Cold
If you experience any of these symptoms, talk to your neurologist. There are treatments and interventions for each one, so please don’t suffer in silence.
What else would you add to the list?