Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

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Thursday

Multiple Sclerosis: 7 most troubling MS emotional symptoms



Exploring emotions with individuals living with multiple sclerosis

The emotional symptoms of multiple sclerosis are challenging to delineate – even for doctors, medical researchers, and scientists. This potentially disabling neurological disease, often tagged the MonSter, may take very different forms in various patients, and its timetable may seem random at best.

Let’s take a look at life with MS and the emotional effects this neurological disease can have in those who must live with it around the clock.

What are the most common emotional symptoms of MS?


MS may cause a large assortment of emotional symptoms, which may vary widely among individuals. In fact, the emotional symptoms of MS may even change for any given patient with each recurrence, exacerbation or incidence of the disease.

However, several MS emotional symptoms seem to be common complaints among those who know the MonSter all too well.

The emotional symptoms of MS may include depression, fear and anxiety, a feeling of isolation, major mood swings or even thoughts of suicide.

1. Depression

Countless individuals, living daily with MS, described discouragement and even periodic or prolonged depression. Donna B., Kerri B. and Rebecca N. spoke of the depression that can come with MS.

Dale E. associated cognitive symptoms with the tell-tale physical fatigue that so often affects MS patients. “The two are so closely related that it’s hard to tell which causes which,” he said.

2. Fear and Anxiety

The uncanny ability of MS attacks to crop up anytime without warning is often a huge source of anxiety for those who must live with the neurological condition. Bridget G., Heather L. and others echoed this concern.

“It’s easy to become paranoid about when the next MS symptoms will appear and whether they will stop me from working,” said Richard W.

“MS carries a fear of the unknown,” said Brian H. “I never know what is going to happen to me – not that I knew before MS, but the future is even more daunting.”

“I can still see it in my dreams,” recounted Katrien deP. “What would it feel like to be suddenly paralyzed?”

3. Frustration and Helplessness

One of the major lifestyle adjustments for many MS patients is the need to rely upon others for daily assistance. This can cause both frustration and a feeling of helplessness.

“Clearly, my husband should be nominated for sainthood,” said Heather L.

Bridget G. pointed out how she copes with MS concerns with her sense of humor. “My husband and kids keep me trucking right along – sort of,” she said.

4. Isolation and Loneliness

MS, with its potentially debilitating symptoms, can cause individuals to feel isolated from society. Part of this problem may be the unpredictability and apparent inexplicability of the neurological condition.

“One of the most frustrating factors of MS is the inability to describe this to your friends and family members,” said Meghan V.

“It’s hard to explain how you feel, and it’s almost like they don’t believe me,” said Tracey S. “I can’t blame them, though, because I will tell them that I slept 15 hours the night before. Yet I am still exhausted.”

Linda R. agreed. “Folks find it hard to understand why I may be able to accomplish a lot one day, and barely walk across the room the very next day.”

“Social isolation may be the most troubling MS symptom of all,” said Jeanne C. “This is the most crippling aspect of MS that I deal with, as I want to continue to be who I was prior to MS.”

5. Mood Swings

The unpredictability, discomforts, concerns and other issues associated with MS often leads to mood swings for those dealing with it. Kaye G., Heather L., Judy S. and others confirmed this concern.

“It’s a roller coaster of emotions,” Dori S. explained. “Dealing with them is difficult. So is feeling OK one minute and crashing on the couch the next.”

6. Self Image Issues

Many of the symptoms of MS can be downright embarrassing. Physical symptoms (particularly loss of balance, bladder issues and bowel problems) and cognitive symptoms (such as speech and memory troubles) may abash those affected.

“I joke about it with people I know,” said Judy S., “when I am actually embarrassed on the inside and feel like running from the room.”

“People just think I’m stupid,” complained BethAnn P., “but I know I wasn’t like this before.”

“Pride can be a problem,” admitted Caroline S. “I don’t want to use a walker in public.”

7. Stress

Life stresses can increase an affected individual’s odds of experiencing another MS episode, as Goran K. pointed out. Troubling stress and even positive excitement overload can exacerbate MS.

Also, because MS flare-ups (also known as relapses or exacerbations) are usually unpredictable, patients can become anxious about potential instances. Anticipation of potential flare-ups is a prevalent source of stress for MSers.

“It’s a nasty sort of Catch-22,” recounted Amy T. “MS can cause stress, and stress can aggravate MS.”

Therapy in Shared Concerns

Many individuals living with MS indicated that they found a certain element of relief in simply sharing their concerns and complaints with others.

Patti G. put it this way: “I know I'm not imagining things – and I’m not crazy,” she said. “I know I'm not the only one on the planet living through this.”

Many MS patients learn to adapt to life with the MonSter, growing adept at self-injections (of MS medications) and gaining personal confidence through the personal battle they face each day.

Additional MS Symptoms

In addition to emotional symptoms, MS can also cause physical symptoms (including balance issues, bladder and bowel problems, burning sensations, chest pain, coordination loss, fatigue, foot drop, headaches, heat sensitivity, muscle weakness, nerve pain, numbness, sexual dysfunction, sleep problems, spasticity, tremors, vertigo, vision problems, walking difficulties and more ) and cognitive symptoms (such as memory issues, concentration challenges, thinking problems, speech difficulties and more).

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Multiple Sclerosis:7 most troubling MS emotional symptoms
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Monday

Multiple Sclerosis: 3 most troubling MS cognitive symptoms



Firsthand experience counts for plenty, when it comes to identifying cognitive symptoms of MS.

Cogitation requires deliberation, particularly for those who live with multiple sclerosis. What does that mean? Thinking can be a stretch, when the MS MonSter rears its angry head. Maybe the difficulties are momentary, but sometimes they can last long enough to become frustrating and particularly troublesome.

When that happens, MSers battle cognitive symptoms of the chronic medical condition.

The cognitive symptoms of MS stretch definitions – even for doctors, medical researchers and scientists. This potentially disabling neurological disease may take very different forms in various patients, and its timetable may seem random at best.

Perhaps those who live with multiple sclerosis around the clock are able to describe the cognitive symptoms of the neurological disorder most accurately.

What are the most common cognitive symptoms of MS?

Multiple sclerosis may cause an assortment of cognitive (or mental) symptoms, which may vary widely among individuals. In fact, the cognitive symptoms of MS may even change for any given patient with each recurrence, exacerbation or incidence of the disease.

Even so, several MS cognitive symptoms seem to be common complaints.

What are the most troubling cognitive symptoms of multiple sclerosis?

Instead of forming a discussion of MS cognitive symptoms from personal experience or research alone, I decided to interview several others who live out the courageous fight personally against the dreaded neurological disease.

Let’s hear from specific individuals, who live with MS daily. For easy reference, these first-hand comments about MS cognitive symptoms are arranged alphabetically (by symptom).

Cognitive Symptoms of MS:

Cognitive symptoms of MS may include concentration problems, memory issues, speech difficulties and more.

Many MS patients do not like to talk about the cognitive symptoms that may arise. However, Kerri B., Paul B., Dale E., Brian G., Ashley M., Catherine M., Kelly O., Lori P., Ryan R., Ally S., Dori S. and others admitted that their concentration, memory and even speech have been affected by the neurological condition.

1. Concentration Problems

MS sufferers usually describe their concentration challenges as distractibility or even issues of focus.

“My mind gets foggy,” said Jennifer S. “The cognitive issues can drive me nuts.”

“Focusing can be an issue,” Ryan R. explained. “It can get sort of confusing sometimes, even right in the middle of a task.”

“MS can feel like a juggling act, especially with too many stimuli,” recounted Dori S. “Loud noises, flashing lights, and other distractions can make it really tough.”
 

2. Memory Loss

Forgetfulness is a nearly universal complaint among those with MS. Often, this points to short-term memory issues, as Elizabeth C., Marie F., Andrew G., Ryan R., Paul T., Anne W., Nicky W. and others confirm.

“The most annoying symptoms of MS are cognitive,” explained Ashley M. “Sadly, I can tolerate the vertigo, fatigue, balance and numbness issues. But the memory problems, such as forgetting words, really leave me feeling rather frustrated and helpless.”

Sometimes memory loss can come and go with MS, as Debbie R. pointed out. “I understand about forgetting people’s names,” she said. “That drives me crazy! Of course, it is hilarious to me to notice how quickly I remember them later, after I am home and not in the middle of an awkward conversation.”

“I have two degrees,” confessed Bridget G., “and I barely remember any of it anymore.”

“It’s weird,” said Dori S. “Someone can give me a one number, and only the first two or three numbers stick.”

Wendy T. agreed. “I can’t remember things that need to be done. This means making lots of lists.”

“I can do something one day and not remember how to do it the next,” said Ally S. “This makes me look incompetent, and I hate it.”

3. Speech Difficulties

A surprising number of those with MS point out how they often find themselves misusing words, or unexpectedly substituting the wrong words in their speech.

Deborah G. described difficulties with slurred speech. Terri E. spoke of “losing the words I want to say in the middle of a sentence.”

“I have to stop midsentence,” said Brian H., “when I struggle with word recall from MS.”

“Sometimes I know what I want to say,” explains Richard R., “but I lose the word right as I am about to say it. We call these instances brain farts.”

Lynda K. agreed. “My kids chuckle a bit,” she said, “when I use the wrong words. I might say, ‘Pass the monkey,” instead of “Pass the milk.’ It’s just a slip or a blip.”

Of course, as medical researchers gain increased knowledge about the causes and potential cures for MS, then the thoughts and minds of those who face the MonSter daily may take a more determined positive turn as well. Many already try to put a positive spin on life – even life with MS.

Additional MS Symptoms

In addition to cognitive symptoms, MS can also cause physical symptoms (including balance issues, bladder and bowel problems, burning sensations, chest pain, coordination loss, fatigue, foot drop, headaches, heat sensitivity, muscle weakness, nerve pain, numbness, sexual dysfunction, sleep problems, spasticity, tremors, vertigo, vision problems, walking difficulties and more ) and emotional symptoms (such as depression, fear, anxiety, frustration, feelings of helplessness, a sense of isolation, mood swings, self image issues, stress and more).


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Multiple Sclerosis: 3 most troubling MS cognitive symptoms
Created by this user,
including adapted public domain artwork

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Sunday

Multiple Sclerosis: 20 most troubling MS physical symptoms



Let’s take a look at some first-hand views from individuals living with MS. What insights can MS warriors provide, based on their own experiences with the MonSter?

What are the most common bodily symptoms of multiple sclerosis?

MS may cause a full constellation of physical symptoms, which may vary widely among individuals. In fact, the symptoms of MS may even change for any given patient with each recurrence, exacerbation or incidence of the disease.
 
However, several physical symptoms of MS seem to be common complaints.

What are the most troubling physical symptoms of MS?

Instead of forming a discussion of MS physical symptoms from personal experience or research alone, I decided to interview several others who live out the courageous fight personally against the dreaded neurological disease.

Let’s hear from specific individuals, who live with MS daily. I asked several fellow MSers for candid comments, and their remarks were intriguing. For easy reference, these first-hand comments about MS physical symptoms are arranged alphabetically (by physical symptom).

20 Physical Symptoms of MS:

Physical symptoms of MS may include dizziness, fatigue, muscle weakness, numbness or tingling, pain, tremors, lack of physical coordination, vision problems, loss of bladder or bowel control, sexual dysfunction and full or partial paralysis.

1. Balance Problems

Balance is a nearly universal challenge for individuals living with MS. Those reporting problems with balance included Judge A., Bridget G., Suzie K., Jack M., Linda N., Jo R., Ryan R., Diana S., Lorraine V. and Brent W.

“Falling down multiple times a day is embarrassing for a 25-year-old,” said Paul T.

“I have taken lots of nasty falls,” added Caroline S. “My biggest issue is gait and balance issues. I tripped or fell four or five times in one day, and that was with a cane.”

2. Bladder Issues

The nerve damage that may result from MS can cause incontinence and other bladder problems. These symptoms may range from an increase in frequency and urgency to actual accidents.

Caroline S. described the bladder issues that came with her own MS experience, along with frequent urinary tract infections. Tracie A., Leanne B., Paul B., Deborah G., Kim E. and Lisa G. admitted to bladder control problems as well.

“The bladder issues are awful,” Diana S. confessed. “I hate running to the bathroom so often.”

“There is no embarrassment quite like this … in public,” said Brittany D.

3. Bowel Problems

MS can also lead to digestive issues, such as irritable bowel syndrome (IBS) and even bowel incontinence.

Bowel problems may be the most uncomfortable discussion topic, when it comes to MS symptoms, but several individuals did indicate this had been a personal problem. Admitted sufferers included Paul B., Cindy F., Ann K., Stephanie K., Wendy L., Jason N., Laura P., Bruce T. and others.

4. Burning

Nerve damage of MS can cause a painful burning feeling in many individuals. Karla D., Wendy H., BethAnn P., Bart R, Brooke R., Diana S., Anne W. and others confirmed this complaint.

Tammy S. described a burning sensation that seems to strike her face, ears, neck, shoulders and other areas. “It’s a burning, an insane burning, an uncontrollable burning,” she said.

“My worst symptom is a burning in the middle of my back that runs all the way up into my shoulders,” explained Ty B. “It feels like someone has a hot iron against me.”

Brittany D. spoke of her own burning from MS. “My left leg, from just above the knee through the foot, feels like it’s on fire. I keep touching it to see if it is too hot, but the skin feels cool.”

“I have pain and burning in my back,” said Tracie A. “Sometimes I can only stand for a few minutes before I feel like I can just not stand it anymore.”

5. Chest Pain and Tightness

Many MS patients endure a severe chest tightness known as the M.S. Hug.  Suzy S. described the M.S. Hug as “a throbbing neck and chest.”

David L. said, “The M.S. Hug created a permanent [invisible] banding around my torso.”

“Sometimes I feel like I’m being choked,” said Lori P.

Becky T. and others endured extensive cardio-pulmonary testing to rule out heart attacks before her M.S. Hug was labeled as such.

Tracy C., Joanne deM., Mark D., Brian G., Monica J., Paula K., Heather L. and other multiple sclerosis patients also described M.S. Hug experiences.

6. Coordination Loss

Neurological problems associated with MS may cause a lack of coordination that can affect small motor skills, large motor skills or both. Challenges of coordination were shared by Judge A., Barbie G., Tina T. and many others.

Challenges with coordination and dexterity may be linked to the numbness that often affects those with MS.

“My hands often become numb, all of a sudden, causing a loss of dexterity,” explained Jo R.

7. Fatigue

Extreme fatigue may be the number one complaint among MS patients. Kerri B., Katrien deP., Kim E., Lisa G., Monica J., Mendy K., Heather L., Julie L., Michelle M., Rebecca N., Gary O., Kelly O., Karen P., Lori P., Andrew R., Jo R., Ryan R., Ally S., Diana S., Suzy S., Tina T., Wendy T., Anne W. and many others confirmed this.

This all-consuming tiredness may strike quite suddenly, and it may or may not be accompanied by drowsiness.

“Basically, it’s a lack of stamina, more than sleepiness,” explained Lisa F.

“It’s like moving slower than a turtle on a good day,” said Carol A.

Linda R. described the MS fatigue this way, “The immediate collapse of energy is best likened to the wall that marathon runners seem to hit at a certain point of a race. Without warning, the energy tank is completely empty.”

“Once I get overtired, it all goes downhill from there,” said Lisa G.

Jennifer S. agreed. “Fatigue is the biggest bummer of them all,” she explained. “You could be doing something and suddenly hit that wall of tiredness.”

“Fatigue is definitely number one on the list of troubling symptoms,” said Wendy L.

8. Foot Drop

What is foot drop? Essentially, the nerve damage of MS can cause one ankle to fail to function properly, so that the patient may seem to trip over his or her own foot. Some individuals with MS wear corrective braces to keep ankles flexed for improved balance.

Walking issues and problems with gait were common complaints, reiterated by Jo R., Laura T. and other MS patients.

Rebecca N. put it this way,” I walk slowly because of foot drop and balance issues.”

9. Headaches

Although most neurologists refuse to link MS and migraines, many patients do complain of severe headaches.

Christy C., Wendy L., Caroline S., Becky W., and others reported frequent headaches with MS.

In fact, Linda C. told a story of several visits to headache specialists, allergists, ophthalmologists and otolaryngologists (ear, nose and throat specialists) for headache diagnoses and treatments before her MS was identified.

10. Heat Sensitivity

Nearly all of those with MS mentioned issues of sensitivity to heat.

In fact, heat sensitivity with MS is a proven medical concern, known as Uhthoff’s Syndrome. Even the slightest elevation of body temperature can exacerbate existing (or even previous) symptoms. For this reason, many individuals with MS avoid hot showers, hot baths, steaming spas, saunas and other high heat environments.

Brian H. recounted, “I am always feeling hot. I have the A/C on in the middle of winter.”

“It’s really annoying,” said Ally S., “because I’m always either really cold or really warm – never comfortable.”

For Cindy F., the heat sensitivity seems to occur most often at the end of the day. “Starting in the late afternoon,” she said, “I feel like I am in a sauna.”

“Trust me,” said Linda R., “The heat sensitivity of MS made hot flashes a rough ride.”

Joanne deM., Mark F., Stephanie K., Lisa R. and others complained of heat sensitivity with MS as well.

11. Muscle Weakness

One of the most disabling symptoms of MS is the muscle weakness that seems to sap strength from those who must face the neurological disease. Weakness was a common report among Craig B., Linda C., Brian G., David K., Lori P., Ryan R. and other MS patients.

Michelle M. explained how she has perceived a distinct “loss of strength on my left side.”  This muscular weakening may affect a single limb, a side of the body or the entire physique.

Kim E. painted another picture of the strength loss, explaining her difficulty with mobility. “I have no strength in my legs now,” Kim E. said. “My left leg hardly bends, so I need to use a walker.”

12. Nerve Pain

A classic symptom of MS is an electrifying paint that runs down the patient’s spine. This shocking symptom, known as L’Hermitte’s Sign, afflicted Brooke R., Andrew R, Caroline S., Anne W. and many other MS patients.

“I feel a shock down my spine when I bend forward,” Andrew R. explained.

Judy S. reported nerve pain in her fingers. “The pain led right up to my elbow,” she said.

For Tiffany D., the pain struck lower. “I have had pain down my left leg and into my foot,” she stated.

Lori P. said, “The pain is in my hips, legs and arms.”

“For me, the pain struck in my left arm and leg,” remarked Brent W.

13. Numbness

MS and the associated nerve damage frequently leads to numbness of various body parts. Judge A., Amy C., Bridget G., Monica J., Telissa K., BethAnn P., Lori P., Jo R., Tamika W.. and others confirmed this from their own experiences with the neurological disease.

Suzy S. described numbness on the entire left side of her body. For Caroline S., the numbness primarily affected her fingertips, making typing quite challenging. Diana S. spoke of a loss of taste sensation on her tongue.

Katrien deP. described this MS symptom as “sleeping feet and hands.” Heather L. spoke of an “all-over achiness.” Kelly O. said she suffers from “a tingling from head to toe” and “numbness on the left side.”

Deenalyn D. spoke of a strange sort of persistent itching on the sole of one foot.

For Diana C., this numbness was so severe that she lost all sensation of pain in her hands. “I can cut myself and only realize it when I see the blood, or if someone else brings it to my attention,” she remarked.

Carey S. said she sometimes finds herself “unable to sense temperature at all.”

14. Sexual Dysfunction

Perhaps linked to the potential numbness or loss of physical sensation that may accompany MS, sexual dysfunction is occasionally seen in affected individuals (both male and female).

Judge A., Joanne deM. and Anne W. both described this as an inability to climax.

15. Sleep Problems

Disrupted sleep is a frequent concern for those with MS. Physical symptoms (such as tingling or numbness, muscle twitching and frequent or urgent urinary or bowel issues) may awaken individuals in the night.

Dori S. recalled “not being able to sleep more than four hours at a time.”

16. Spasticity

Lori P., Andrew R., Lorraine V.  and others spoke of the muscle spasticity that often occurs with MS, pointing out how he suffers from “twitching muscles.” Vivian S. spoke of “spasticity of the legs and torso.”

“Muscle spasms cause my legs to be in pain for days at a time,” said Wendy L.

“The muscle spasms always seem to strike when I’m trying to rest,” said Jennifer S.

Brittany D. described a facial spasticity. “It makes me feel awkward when my face starts twitching furiously.”

“It’s like the feeling of thousands of rubber bands breaking all at the same time,” said Christopher T. “This happens only on my legs and especially when I am under stress.”

“Not a day goes by that the agonizing pain from cramping and spasming muscles doesn't make me annoyed and weary,” added Terri E.

Tracie A., Karen P., Linda R., and others also recounted personal struggles with the spasticity of MS.

17. Tremors

Lay people often associate physical tremors with Parkinson’s Disease (another neurological disease) but these may be a physical symptom of MS as well.

Renee B. described her own tremors. “My legs feel like they are being vibrated constantly,” she said. “This can be intense and unbearable.”

Sherri A. presented severe discomfort that resulted from MS tremors. “The shaking started suddenly,” she said. “It left me with such pain in my right hip joint all the way down on my right side.”

18. Vertigo

The vertigo (or even dizziness) that comes with MS may be mild, or it may be a most uncomfortable and debilitating whirling that sends sufferers right to bed. Those reporting vertigo difficulties include Judge A., Paul B., Christy C., Katrien deP., Julie L, Joel N., Debbie R., Linda R. and Brent W.

“The vertigo is like the worst amusement park ride of all,” said Amy R., “except that it doesn’t stop.”

Patti G. described the vertigo of MS as “motion sickness caused by normal life.”

“I feel like I am on a boat all the time,” explained Cindy F.

Elizabeth C. recounted how she has suffered with severe vertigo from MS. “I’ve never been so sick in my life,” she said. “I was bedridden for two weeks. I have had many symptoms, but vertigo is truly the worst.”

19. Vision Problems

Caroline S. recalled instances with double vision and difficulty tracking sights with her eyes.

“My vision has been horrible,” explained TaNisha W.

Carey S. described her MS vision problems as “blind spots.”

“I can’t drive anymore,” said Wendy L. “I have to move my eyes around a lot to prevent them from blurring out, or everything shakes around.”

“I find the numbness, balance and fatigue only slightly less annoying than the vision troubles of MS,” said Kimberley L.

Paul B., Tracy C., Brian G., Candy M., Dottie M., Katherine M., Linda N., Karen P., Lorraine V., Becky W.  and others also complained of vision problems associated with MS.

20. Walking Difficulties

The fatigue, foot drop, muscle weakness, tremors and other physical symptoms of MS can make walking quite challenging, particularly during exacerbations, episodes or flare-ups – when neurological symptoms may be amplified.

Judge A., Lisa G., Molly M., Tina T. and others described problems with walking, based on MS.

Several MS patients confirmed that they frequently or regularly require mobility aids, such as canes, walkers, carts and wheelchairs. Those facing the most severe and progressive forms of the disease may require these aids indefinitely.

“I have my cane for in the house and a wheelchair for outside,” reported Sherri A.

Treatments for MS Symptoms

Many of the most troubling symptoms of MS may be addressed, at least in part. Medication, nutritional adjustments, vitamins, exercise, physical therapy, increased rest and stress relief methodologies may help some individuals with MS symptoms.

On the other hand, the many medical tests, costly medications and symptomatic treatments for MS may also lead to increased insurance premiums and medical expenses. This, in itself, can lend a great deal of discomfort to the lives of those who are affected by this chronic neurological medical condition.

Additional MS Symptoms

In addition to physical symptoms, MS can also cause cognitive symptoms (such as memory issues, concentration challenges, thinking problems, speech difficulties and more) and emotional symptoms (including depression, fear, anxiety, frustration, feelings of helplessness, a sense of isolation, mood swings, self image issues, stress and more).


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Multiple Sclerosis: 20 most troubling MS physical symptoms
Created by this user,
including adapted public domain artwork

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