Many will know the myriad symptoms associated with multiple sclerosis (MS). The most common of those symptoms — one experienced by an estimated 80 percent of people with the disease — is profound, and oft debilitating fatigue. Our fatigue may likely be caused in part due to the extra effort it takes for signals to move from our gray matter to their intended destinations.
Close on the heels of fatigue would be experience with some form of loss of sensation. From sight and feeling to even taste and hearing, our senses can be diminished due to the demyelization which occurs in the central nervous system.
Many may not be aware that there is an opposite side of diminished sensation due to MS: hypersensitivity.
Perhaps the best way to describe hypersensitivity to someone not quite grasping the concept would be the intense paresthesia (pins and needles) feeling one might get when a leg is “asleep” and you try to walk on it. The prickling might be something with which one can contend. Taking a step on that waking limb can be a combination of fire and ice while bees of 10,000 score sting.
Light can be something else to which MS can make us hypersensitive. Fluorescent lighting, in particular, can be an issue for many neurologic conditions.
I have heard anecdotal evidence from people with MS about their sensitivity to sound, smell (hyperosmia), and taste as well.
I’ve been fortunate enough to have had a long conversation with the author of a paper about a woman who became hypersexual — to the point that she and her loving husband considered a sexual surrogate as she needed sexual release six to 10 times per day — until corticosteroid treatment reigned in her over-active libido.
Now, many of us will know the opposite side of that coin — MS being associated with reduced sexual drive and ability. To us the idea of a hyperdrive in the bedroom might be more appealing than the converse. Reading that paper and talking with the medical professionals, however, leads me to believe that it would be like the pins and needles of Himeros — Greek god of sexual desire.
Likely the most common of the hyper-symptoms of MS would be heightened, abnormal, and unpleasant sensation felt when touched — dysesthesias.
I personally experience the double-headed dragon of reduced sensitivity and dysesthesia. While my legs often feel like two dead sticks, surrounded with cold liver, and wrapped tightly with clingfilm and I can hardly sense them beneath me, a slight brushing of them by a passing puppy or affectionate wife will send me through the roof.
It’s nearly painful (No, it is painful!) to simply be lightly touched sometimes. It’s not the same as walking on that waking foot, but its closer to it than anything else I can think to describe it.
MS is a disease that takes, and takes, and takes. We know that. Even people outside our innermost circles will know that MS steals away ability to walk well, speak articulately, move limbs, and so many others. Not even many healthcare providers seem to understand the complexities of hypersensitivity when it comes to disease prognosis.
But it’s not completely their fault.
While these over-the-top symptoms seem to get no notable mention in the MS world, they are there. Some may say this lack of “press” is because they are not common (and no one is saying that hypersexuality is “common”). I argue that it is our job as people with the disease and experiencing these odd symptoms to push the medical field to understand. They cannot know something that we do not tell them.
If we desire heightened sensitivities to be understood, they must first be recognized. To be recognized, they must be reported. We must hold ourselves and the medical community responsible. Remember, pain wasn’t a recognized MS symptom not that many years ago.
It was only committed patients knowing that their pain must be MS related that changed that course. Hypersensitivity and MS will likely be the same.
Wishing you and your family the best of health.