MS Awareness: What You Need to Know about MS Symptoms

Many of you know that I was diagnosed with relapsing-remitting multiple sclerosis (MS) in 2016. However, I’d struggled with demylenating brain lesions since 1999–nearly 15 years.

One of the greatest frustrations with MS is how hard it can be to diagnose it correctly. It often mimics other diseases, and people can become frustrated with a series of well-intended but wrong diagnoses (lupus, stroke, inner ear problems, other neurological diseases, Lyme disease, etc.).

The following videos are helpful in identifying common and lesser known symptoms of MS.

What to Do If You Think You or Someone You Love May Have MS

If you or someone you love is experiencing symptoms of MS, see a doctor who can assess your symptoms and recommend a neurologist if he or she believes you need further evaluation. If symptoms persist, bring it to the doctor’s attention again.

It’s important to understand that it may take time and numerous tests to get a clear diagnosis of multiple sclerosis. Doctors often use a tem called clinically isolated syndrome when someone has an experience or doctors discover a finding that indicates multiple sclerosis but does not yet meet diagnostic criteria. Doctors may also use the term possible multiple sclerosis.

Track any symptoms you may be having. Be sure to include dates. Keep a journal of the onset of any new symptoms that may have a neurological cause. With MS, everyone is different, but early MS symptoms included dizziness, vomiting, hearing problems, vision problems, a facial droop, and difficulty walking. I also had neuropathic pain in my legs and feet. The first doctors who saw me thought I had inner ear problems and Bell’s palsy or had had a slight stroke. Also, keep a record of test results.

Take someone with you to important appointments for support. Important appointments may be different for you than for me. Any appointment when I thought my doctor might confirm a diagnosis was an important appointment for me. I couldn’t trust myself to absorb information clearly and objectively. People respond to crucial information differently. It’s helpful to have someone else listening if we need a moment to absorb the idea of medication or injections or a change in diet or lifestyle.

Share your MS story with us. We love to hear from you.

For more information and support, visit the National MS Society.

 

What Is MS: Multiple Sclerosis Awareness

Photo Credit: Pixabay

 

Many of you know that I was recently diagnosed with the relapsing-remitting form of multiple sclerosis (MS). My diagnosis came after a life-threatening appearance of a demylenating lesion in my brain stem (specifically the pons region of my brain stem) in 1999. This was followed by more than ten years where I experienced a number of bizarre, seemingly unrelated symptoms.

Although I visited a number of neurologists and other physicians, all but one seemed to find my symptoms unrelated. Several times I was told unequivocally by neurologists that I did NOT have MS. Over those years, my husband and I moved several times, and I couldn’t any establish continuity with any doctor long enough to make sense of my history of dizziness, falling down, headaches, choking, foot cramps, finger tremors, hearing loss, nausea, and a changing gait.

Then in late 2014, I developed additional neurological symptoms and was ordered to undergo a brain biopsy of a new large lesion that had appeared in and around the area of my brain stem. The neurosurgeon was confident it was a glioma, considered to be an early form of cancer. The biopsy required a crainiotomy and resection (p. 8) , which was an additional challenge to my neurological system.

Why MS is Often Misdiagnosed
My situation is not unique. Many disorders share symptoms with MS, making diagnosis difficult. Those disorders include

Lupus: can cause muscle pain, joint swelling, fatigue, butterfly-shaped rash across the cheeks, and headaches
Lyme disease: fatigue, fever, headaches, and muscle and joint aches
Stroke: loss of vision; loss of feeling in the limbs, usually on one side of the body; difficulty walking; and difficulty speaking
Migraine: intense pain; throbbing; sensitivity to light, sounds, or smells; nausea and vomiting; blurred vision; and lightheadedness and fainting
Fibromyalgia: headaches, joint and muscle pain, numbness and tingling of extremities, memory problems, and fatigue
Conversion and psychogenic disorders: conditions in which psychological stress is converted into a physical problem — such as blindness or paralysis — for which no medical cause can be found
Sjogren’s disorder: dry eyes, dry mouth, fatigue, and musculoskeletal pain
Vasculitis: joint pain, blurred vision, and numbness, tingling, and weakness in the limbs
Myasthenia gravis: drooping eyelids, double vision, difficulty with walking, speaking, chewing, and swallowing
Sarcoidosis: including fatigue and decreased vision
Vitamin B-12 deficiency: fatigue, mental confusion, and numbness and tingling in the hands and feet
Acute disseminated encephalomyelitis (ADEM): fever, fatigue, headache, nausea, vomiting, vision loss, and difficulty walking
The National MS Society has created the following short video. It gives a simple explanation of what happens in a person’s body when they live with MS and helps us understand why the disease can be so difficult to diagnose, since MS influences every function of the brain, and therefore, the body.

The video helped me understand that because one of my largest lesions damaged the pons area of my brain, it makes sense that my breathing, swallowing, taste, sleeping, vision, hearing, balance, and walking have changed.

WHAT IS MS?

A Day in the Life of MS

dead-battery-1623377_960_720This morning my thermostat batteries died, so of course, I changed them.

No biggie, right? You’d think, but not for me. Not any more.

Ten steps from the living room couch to the thermostat to diagnose problem.
Eight steps to the drawer to get AA batteries.
Nine steps to the thermostat to try to put in new batteries.
Failed effort, due to blurred vision, weak fingers, and trembling legs.
Eight steps back to the drawer to retrieve a screwdriver for battery prying.
Eight hand-on-wall steps back to thermostat to pry with one end of the screwdriver and pound with the other as legs shake like my dryer on the spin cycle.
Eight wobbling steps back to drawer to return screwdriver, accompanied by muttered prayers.
Eight final wobbles back to couch, followed by plop-and-prayer for sleep.

At 8:30am, I’ve completed my first marathon for the day. There will be many more. A trip downstairs to do laundry, gripping the railing and leaning against the wall. Pulling myself back up the stairs carrying small loads of clothes I can manage.  Simple tasks I completed without thought by others exhaust me since being struck by multiple sclerosis (MS). Putting on pajamas or dressing  can seem insurmountable.

But not just for me–for many people who live with chronic illness.

Low Batteries: Fighting Fatigue

Medical experts report that it takes five times the effort for people with multiple sclerosis (MS) to accomplish the things healthy people can do. Put this into perspective by thinking how tired you’d be if you did five day’s work in one day every day for the rest of your life.

You can almost always assume someone with MS or other chronic illnesses are trying to beat back exhaustion. I’m in my pajamas by 6:00pm. I attend evening events very seldom. When I go to church on Sunday, I have a “down” day on Monday. I’m proud when I walk on the treadmill for five minutes. On “down” days I drive to my mailbox to conserve energy for more important things (hey, it’s a long driveway).

fatigue

The Pain of It All: Symptoms

MS symptoms vary widely. I people with MS can lose color in their vision. Their sight can also diminish in other ways. My vision has blurred, making it difficult for me to read and work on my computer, even with a 24″ monitor. Migraines can last for days and weeks. Debilitating neuropathy pain in legs, feet, and hands often escalates at night, along with  ongoing muscle spasms and cramping in legs, feet, and back.

About that Twitch: Neurological Problems

Many patients with MS find the path to diagnosis long and frustrating because symptoms can mimic so many other things: lupus, sarcoidosis, Lyme disease, stroke, and other illnesses. For this reason, other illnesses must be ruled out when making an MS diagnosis.

MS is a neurological disorder that causes the protective myelin covering over the nerves in the brain to deteriorate. The nerves become exposed, which causes lesions (tissue abnormalities), not tumors (cell clusters that grow). Brain lesions multiply over time, causing increasing disruption of brain and, therefore, body function.

My lesions attacked my brain stem. I’ve had two major attacks–the first in 1999 and a relapse in 2014. MS patients seldom return to the same threshold of health after a relapse. My relapses have affected my walking, balance, hearing, vision, swallowing, memory, resilience, and cognitive function.

For instance, I now work use a 24″ computer monitor. I must take breaks every hour to “rest” my brain.  I walk on the treadmill in 5 minute increments, which is my usual max time. I no longer work at my computer beyond lunchtime because of fatigue. I experience frequent and prolonged migraines. My legs and feet cramp continually. I take medication for neuropathy pain in my legs and feet. And like most MS patients, I’m always cold.

Takeaway: Eyes Wide Open

Suffering can bless us with a perspective on others’ pain. It can either bring us into community or isolate us; drive us to bitterness or build our awareness of the sorrow that surrounds us. Chronic illness can gift us with unique sensitivity to those who quietly suffer–not necessarily with illness.

Jesus saw the needs of those who stood at the edge of the crowd, who were unable to push to the front, who could only catch the edge of His robe, or who climbed into trees to see Him. They were all looking for someone who cared enough about them enough to reach out and help, maybe even love them.

Jesus touched unclean bodies. He used the power of His words, His hands, His presence, the hope in His eyes, His wisdom. You may be sick–but you can use your pain to touch someone else. A day in the life of your pain may have given you the gift of words, experiences, the touch of a hand on an arm, of prayers, quiet presence, hope, or encouragement needed by someone else. Are you willing to live with eyes wide open to give to others, even in your illness or pain?

Real Face Time: How a Diagnosis of Brain Tumor Can Change Your Priorities

The first week of December, my husband Dan and I flew to the Pacific Northwest forFamilyPix2014 our Very First Ever Visit with both of our children, their spouses, and all three of our beautiful grandsons.

Life doesn’t get any better than this–even though the babies had croup, were teething, and cried pretty much the whole time.

 Crying and mayhem didn’t matter because we were together, enjoying REAL Face Time.

But on December 30, I was lying on my back in the neurology unit of our local hospital, awaiting surgery.

My diagnosis: glioma–a nickel-sized tumor surrounding my brain and producing swelling.

My neuro surgeon had calmly explained the risks and realities of what my MRIs had shown. The mass was in an inoperable location. They would be able to take only half of it through a craniotomy procedure in an effort to biopsy a sample. Little had a I realized when I walked into my doctor’s office several days before Christmas for pain and tingling in my face that I would be facing brain surgery and a life-challenging diagnosis. What have in learned in these past several weeks?

1. Life is fragile–handle with gratitude.

That FIRST trip to see my grandchildren suddenly came into focus. It could well have been my ONLY opportunity to see my children and grandchildren together. Had I invested those moments well? Would I have gone back and done anything differently?

2. Reconcile, and do it today.

Holding an offense against someone? Don’t wait for them to make the first move–do it today. We’re called to a ministry of reconciliation as Christians. No ifs, ands, or buts.

3. Look and talk like Jesus.

The world pretty much despises Christians because we can be so busy judging the world, that we forget to love the world. And to love them the way Jesus loved them–sacrificially, and always in ways that would glorify God. He tells us that we can’t claim to love him if we’re not loving others. Even our enemies. My enemies–those people who have treated me unjustly and the people I love unjustly. I’m supposed to love them. (Which doesn’t mean giving them a free pass on the consequences of their actions, by the way). But it means releasing my bitterness and anger and praying God’s best in their lives.

I was blessed with five days between my diagnosis and brain surgery. I wrote some letters. Made some calls. Humbled my heart. I’m learning every day what these three lessons mean, and they’re HARD, but they’re sweet.

What about YOU? What would your priorities become if you were suddenly told you had inoperable brain cancer?

Early Signs of Multiple Sclerosis

mri-womanIn 1999, at the age of forty-four, I became suddenly ill. My symptoms included nausea, facial drooping, loss of balance, tingling in my face, arms, hands, and legs, unsteadiness on my feet that quickly progressed to an inability to walk, nystagmus (involuntary eye movement), double vision, and uncontrollable nausea and vomiting.

Doctors found several abnormalities in my brain–a small brain bleed, as well as a large lesion near my brain stem in an inoperable location. Doctors believed the lesion to be a demyelinating lesion and not a tumor. For years, neurologists debated whether or not I had (and still do have) multiple sclerosis (MS).

MS occurs when the immune system goes wacky and attacks the sheath the protects the nerves in the brain and spinal cord. Over 350,000 people in the U.S. are diagnosed with M.S., and it can be difficult to determine a diagnosis because the symptom mimic other illnesses.

Symptoms include

  • discomfort when you move your eyes, just one eye, or general eye discomfort. I felt a sensation of pressure in my eyes for weeks and sensitivity to light. I also experienced double vision, and it times it felt like someone was turning lights up and down on a dimmer switch.
  • balance issues. For a year before I was admitted to the hospital, I repeatedly fell down when I’d turn suddenly. I also felt like the room was spinning. (Three different doctors told me I had an inner ear infection, which was incorrect.)
  • tingly, prickly sensations. My tongue and face felt as if they were “on fire” or as if they were waking up from falling asleep. My legs and arms also felt numb and tingly.
  • tremors. I experienced tremors and tics in my hands and fingers.
  • weakness and exhaustion. For the year prior to my hospitalization, I felt perpetually exhausted. However, at the same time I experienced my brain lesion, I was also diagnosed as a Type II diabetic and with hypo-thyroid disease, which would also explain symptoms of exhaustion.
  • migraine. Before doctors found my brain lesion, I experienced severe headaches and still do.

If you’re experiencing MS symptoms, talk to your doctor. For more information, visit Caring.com.

Interestingly, over the past fourteen years, I’ve seen half a dozen neurologists, some who specialize in multiple sclerosis. In spite of my symptoms, I’ve never been diagnosed with MS, although most of my symptoms linger. I’m pleased to say that I live a full and active life and have found ways to manage my symptoms.