How To Deal With Multiple Sclerosis
Advice For People With Multiple Sclerosis
How can you know if the symptoms you have, are actually Multiple Sclerosis or if your symptoms point to something else entirely?
Hopefully this article will answer that and other questions you may have about this insidious disease.
The advice I give to anyone who asks "how do you deal with this devastating illness" is ... Focus on what you can do and not on what you can't do. When you accomplish something, be proud of yourself.
My second piece of advice is "Use it before you lose it."
Multiple Sclerosis can eventually rob us of the things we used to be able to do (fun things, everyday functions, etc.). If we don't keep active doing the things we can do, when we take a break and want to resume those activities, we find that we don't have the energy for it, or we have lost strength and mobility.
Multiple sclerosis (MS) is an inflammatory, chronic, degenerative disorder which affects the nerves in the brain and spinal cord. Myelin is a fatty substance that insulates or cushions the nerves and it helps in the conduction of nerve impulses. This is where the destruction happens in Multiple Sclerosis.
The word "sclerosis" means scarring and hardening which is caused by damage to the myelin (called demyelination).
Sclerosis slows down the nerve impulses, makes you weak, causes numbness in various places, pain in lots of places, and vision problems.
You may notice that your motor coordination changes every single day - some days it's good, some days not so good. There are days when your legs are good to go, other days, you might not feel safe enough to leave the house or you may need the assistance of a cane, walker or wheelchair. There are days when your vision will change so that you keep several strengths of dollar store glasses handy. If you are past age 40, you might keep ten or more pairs in the house because some days your vision will start out bad and get better as the day goes on, then gets worse after dinner or vice versa where you start out the day great and it gets worse as the day goes on.
There is no way to know when you wake up in the morning, how you are going to be for the day because things change as the day goes on. MS'ers adapt and just take it one day at a time. Those who live with MS'ers either are patient or learn patience. Planned outings can be delayed or canceled altogether depending on how your MS is that day.
Not everyone who gets MS also gets Optic Neuritis. I have never had Optic Neuritis. I do have some blurry vision, floaters (little floating spots), and sometimes flashes of light to the left and right of my head - not directly in my line of vision. The more fatigued I am, the more prominent the flashes of light.
Because different nerves are affected at different times, MS symptoms often develop in certain areas of the body. Some people will see all their MS symptoms only in their legs. Or only in their brain. Or only in their arms. There are patterns with RRMS (Relapsing-Remitting Multiple Sclerosis) - it worsens (exacerbates), then improves, takes a hiatus, then returns, worsens, improves and takes another hiatus. As MS gets worse, the length of time for each period will change.
Early symptoms for classic Multiple Sclerosis usually include vision changes (like blurred vision), numbness in random parts of the body, dizziness, and muscle weakness. I get what I call the "leans" -I feel like my body is leaning to the right or the left. Some days I am too dangerous to leave the house. It is an imbalance that doctors don't know how to treat except with Antivert (generic Meclizine) which has a sedative effect. I am so little in size and weight that the low dose of 25mg hits me like a Mack truck, making me so drowsy that I can be wasted for up to 8 hours.
Restless Leg Syndrome (RLS)
I have had Restless Leg Syndrome since I was four years old but back then, doctors didn't have a name for it. It's a horrible jumpy feeling that attacks me mostly when I am in bed, often waking me up during the night. If I am sitting at the computer or watching TV for a few hours, it creeps up on me. Whether I am active or inactive, I still get it by the end of the day. Exercise helps tame RLS, but it doesn't get rid of it. Medication is the only thing that works, but back when I was little, there wasn't any medication.
Both my grandmother and my mother suffered with it but they didn't have Multiple Sclerosis. They both had what was called "hardening of the arteries" which doctors now know is caused by high cholesterol and diabetes. Many diabetics have Restless Leg Syndrome.
How old were you when you were first diagnosed with Multiple Sclerosis?
Neil Cavuto - Diagnosed in 1997
Annette Funicello, Richard Pryor and Teri Garr
Fast Facts About Multiple Sclerosis
Am I Going To Die of MS?
I can say with certainty that Multiple Sclerosis, by itself, will not kill you.
It is all the medical problems that come with Multiple Sclerosis that will be listed as the first and second causes of death. No one will ever have Multiple Sclerosis listed on the first line of the death certificate as the cause of death because Multiple Sclerosis is not recognized as a cause of death (as of this writing). What I have seen some doctors write on the second or third line is "Complications from Multiple Sclerosis".
While there is no cure for MS, some patients feel the treatment (therapy) is worse than the disease. There are many patients who do well with no therapy at all but choose to treat the symptoms as they come up. Some patients opt not to take any injectable or biologic medications because they come with serious side effects. With nearly every injectable, the warnings mention that the patient could contract progressive multifocal leukoencephalopathy (PML), a serious brain disease. That alone was enough to scare me away.
I am one of the MS patients who choose to treat MS symptoms as they happen. When the symptoms calm down, I taper down or if safe enough, I stop taking the medications altogether because I feel that taking them long term carries bigger risks.
Because MS affects each of us differently, some MS'er's may have motor, speech, breathing or swallowing problems, while others may have memory, cognition or vision problems. It's rare to find all of the symptoms in one MS patient at the same time.
Autoimmune Disease Attract One Another
Multiple Sclerosis is an autoimmune disease. If you have one, you may get another one during your lifetime. I have three autoimmune diseases: I started with Crohn's Disease, then came Multiple Sclerosis, and at age 35, I got Rheumatoid Arthritis. All three are treated with steroids for flare-ups.
Most MS'ers live a normal lifespan. It is the quality of life that is different for each one and that depends on which course of treatment you choose to treat your MS.
I chose to get back to basics and only treat symptoms as they came along. My periods of remission could last as long as ten years when I was having children because MS goes dormant while pregnant. But when MS came back, it came back with a vengeance. At one point, I was taking a different medication for every symptom and more medications to treat the side effects of medications. I had over a dozen bottles lined up on the kitchen counter. To say I felt like a toxic waste dump is putting it mildly. I couldn't function as a writer, a wife, or in my job. I changed my path. I tapered down and then off the worst of the medications, kept Requip and ibuprofen on board, then I went back to basics - daily exercise, a good diet, vitamins and other supplements, rest and mental activity.
In later years, I learned my chosen path was not unique, that many MS'ers go through the same back and forth with treatment plans and medications as I did.
What type Multiple Sclerosis were you diagnosed with?
Know Your MS Type To Get The Right Treatment
It is important to know which type of Multiple Sclerosis you have so that you get the appropriate treatment. Some drugs treat one type but are not good for another type.
After you know which type you have, choose an appropriate treatment. I can't say no treatment is a good choice, because sometimes the symptoms are unbearable. I will say that you should "try" different treatments to see which one is the most comfortable for you.
Multiple sclerosis is rated according to frequency, the severity of neurological symptoms, how much damage has been done, and how well the body recovers from an episode.
1. Primary progressive MS (PPMS) - steadily worsens with time.
2. Relapsing-Remitting MS (RRMS) -the episodes happen more frequently, but go into remission with long periods of low or no symptoms between episodes. This is the remitting part of RRMS.
3. Secondary progressive MS (SPMS) - something like RRMS, except episodes are more frequent with few or no breaks between episodes.
4. Relapsing-Progressive MS (RPMS) - continues to amass damage during flare-ups and remissions.
During the early stages of the disease, symptoms of MS come and go which means they often occur, disappear completely for a time, and then return again.
The treatment plan depends on the type of Multiple Sclerosis that you have and the severity of your symptoms. Treatment plans include medications, alternative (complementary), psychological and chiropractic treatments.
Symptoms of Multiple Sclerosis
Your symptoms may be brief and relatively mild, or they can be very debilitating. The first serious attack can be quick and over with in a week, or it can last a few months.
Common early symptoms include:
- shooting pain in the back or between your shoulders and limbs (called Lhermitte's sign),
- difficulty walking,
- eye pain, and
- vision loss.
Restless Leg Syndrome often accompanies Multiple Sclerosis, as does depression.
Symptoms of the disease vary from patient to patient, depending on where the most damage has occurred in the body.
As MS gets worse, you may have pain or not, because not everyone has pain. Most MS'ers will experience tremors and have a feeling of stiffness when moving or walking.
You may have problems with controlling urination (I wrote the linked hub on how to help with this), swallowing, and thinking clearly.
Many MS'ers are sensitive to heat, so hot weather, a fever, a hot shower, or too much exercise can make their symptoms worse until they cool down. Once they cool down, they are fine again.
MS'ers who have difficulty maintaining comfortable body temperatures find it helpful to wear cooling vests or to place ice packs in strategic places on the body (in bra between breasts, behind knees, and keeping cool cloths on wrists and ankles.
MS is very unpredictable.
Your symptoms may suddenly get worse with no warning, or you may go for years without any problems.
A lot of women who get pregnant find that their symptoms have calmed down or even disappeared during most of their pregnancy and return shortly after giving birth.
That is what happened with me. I have been pregnant 9 times in 12 years and each time, my MS laid low, until either I miscarried or gave birth and then it came back with a vengeance. (PS I gave birth to two sons, both now in their 30's).
Balance and equilibrium abnormalities
dizziness, vertigo, uncoordinated movements, tremor
Does part of you go one way & another part wants to go in a different direction?
Bladder and bowel dysfunction
urgency, incontinence, nocturia, constipation. (See my hub on how to completely empty your bladder)
Do you urinate & have to go again in 10 mins?
mood swings, depression
Is it out of the ordinary for you?
impaired memory, reasoning, concentration
Do you have exaggerated Alzheimer's moments
Can come and go
Always report as it can be sign of stroke, etc.
muscle weakness, spasticity, spasm
Do you have Restless Leg Syndrome? Or Restless Arms?
erectile dysfunction, sexual inactivity
Changes in patterns, painful intercourse
eye pain, vision loss in one eye, double vision [diplopia], involuntary eye movement [nystagmus]
Sometimes MS'ers report eyeball pain, one eye twitches, blurred or hazy vision, double vision
Muscle weakness can involve the extremities
arms and legs on one side of the body,both legs, or all four extremities
Muscles in the affected area may tighten (spasticity) and contract spontaneously (spasm
need to rest and/or sleep during the day in order to continue their activities
Do you cat nap?
An increase in body temperature
can be caused by hot weather, hot bath & showers, or fever; can worsen symptoms or produce new ones
Do you pass this off as hot flashes? Do you get warm for a few mins and then it passes?
You may feel weak and stiff, and your limbs may feel heavy
Do you drag your leg when you walk or have trouble lifting your foot (foot drop)?
Some MS'ers report a band of tightness around your trunk or limbs, or a feeling of electricity moving down your back and limbs. Pins-and-needles sensation or numbness.
Do you feel like someone is hugging you really hard? MS Hug
You may feel lightheaded or dizzy or feel like you're spinning
Do you ever feel off balance and you are standing perfectly still? Or do you feel like you are leaning to one side? I call it "The Leans"
Jumpy or itchy legs or arms
Your legs (and sometimes arms) have a mind of their own and can't get comfortable in one place
When you get in bed at night, do you find that your legs are more jumpy ? Do you ever have an itchy or crawly sensation?
How many MS symptoms on the list apply to your symptoms?
Before Your Doctor Appointment
The checklist below has some questions to ask your doctor (e.g., neurologist) about your Multiple Sclerosis. You might think of some more while he is giving his answers.
Before you print out the checklist, pick out the questions you want him/her to answer. Now get busy looking up the answers so that when your doctor gives you an answer, you will know if he is being truthful and so you will be prepared to ask follow-up questions. You are never going to know if the answers he gives you are correct if you don't do your homework.
The more you know about Multiple Sclerosis, the easier it will be to make important informed decisions about your treatment, medications, and future medical care.
If your doctor does not have answers to at least half of your questions, then you need to shop around for a Neurologist who also specializes in Multiple Sclerosis who has convenient locations and office hours. You want someone who can provide you with knowledge, appropriate treatment "choices" (because treatments are always YOUR choice), and someone who is accessible to you when you need him/her.
If he/she gives you an answer that is different from your research, ask for references, written material, even a "go to" person/place for you to verify.
No doctor will know the answers to all of these questions. Some of these questions, quite frankly, cannot be answered because they just do not know.
An honest doctor will tell you "I don't know" to at least 3 of these questions. That is a good thing.
If he tells you "I don't know" to more than 10 questions, you might want to start interviewing new neurologists who are more informed and up to date.
It also helps to have a doctor who is willing to answer your questions. You want someone who will listen to you when you speak, and not be reading paperwork or worrying about what your next question will be.
ALWAYS take someone with you on doctor appointments, physical therapy treatments, and testings. Never go alone.
What you don't see or hear, your companion will and vice versa.
Keep a little notebook to jot down notes or questions and take it with you to all your doctor appointments.
Take printouts of your most current lab work with you because even though medical records are electronic now so they are accessible online, not every doctor has access or is in the same network as your referring doctor or past doctors.
Take DVD's of your MRI's and CT scans and any other tests you have had done. It helps to track progression.
When you get home, you will always remember something you wanted to ask so don't be so hard on yourself for forgetting.
Questions for Your Neurologist (In No Particular Order)
- What other conditions can cause symptoms that are similar to Multiple Sclerosis? (Many other diseases mimic MS).
- Why do you suspect that I have Multiple Sclerosis? (Ask what the biggest clues were).
- How will my condition be diagnosed? What types of examinations and tests will be performed?
- What is involved in the procedures and tests you will do? (Know the step by step so you are not wondering or worrying)
- How should I prepare for these exams and tests? (Most have little or no prep).
- Are there any risks associated with these tests? (The more invasive, the more risk. Ask if he is considering performing a lumbar puncture)
- Once Multiple Sclerosis has been diagnosed, what types of tests might I need to have on a regular basis?
- What type of MS do I have? (Ask how your type was determined).
- How severe is my current condition? (Especially important if you are presently having an MS flare)
- What is the usual prognosis for people who have this type of MS?
- How do you expect my condition to progress?
- How might MS affect my daily life? Can I continue to work, with or without accommodations? What types of accommodations are available to help me stay employed in my job?
- What type of treatment do you recommend? (Physical therapy, diet, oral or injection medication?)
- Why do you recommend this particular course of treatment? (Remember it is a RECOMMENDATION, and it is always your choice in the end.)
- Should I seek a second opinion? Why or why not? (NOTE: You should always get a 2nd opinion, or a 3rd, 4th, or 5th opinion because NO doctor is infallible. What he misses, another might see, especially if your MS isn't a firm diagnosis yet.)
- Can lifestyle changes, such as diet and exercise, help slow or stop the progression of my Multiple Sclerosis? If so, what changes can you recommend?
- What support resources are available to help me change my lifestyle?
- Is it possible to reverse the effects of MS? (Make sure you've done some homework here so you can determine the validity of his answer.)
- Will experimental medication(s) be used to treat my condition? (Get info on each)
- What are the risks and side effects of injectable medications? (Get handouts on each. When you get home, research them)
- If I experience serious side effects, do you have an emergency telephone number I can call?
- About how long might it take for my MS treatments/therapy/medications to begin working? (Many docs suggest trials from 6 weeks to as long as 6 months. If the treatment plan is not working, you are in charge -- insist on trying something else.)
- How will my condition be monitored? Are there any warning signs I should look for?
- What should I do if my symptoms worsen or these warning signs develop? (Remember to get his emergency telephone number so you can call before you go to the ER)
- Can physical and/or occupational therapy help me to manage my MS symptoms? Why or why not? (This question is letting you know if he has Physical/Occupational Therapist names, addresses & Telephone number to offer to his patients. You can go to facilities, look around, interview patients, ask if they think it is a good place and if they are getting good care. Ask how often they come, how long they have to wait while there, how often they see the actual physical therapist (not the assistant).
- What should I do if I have trouble performing daily tasks and normal activities? (You are looking for him to offer you an exercise program to do at home, for example: walking in place, short neighborhood walks, etc.)
- What alternative therapies might help me to manage my MS symptoms? (Always know what else is available to see if the doc mentions them to you.)
- Are there any local support groups for people with MS? (Many larger hospitals, universities, local churches, and community centers have support groups. Go with someone (friend, relative, etc) - go several times and to different groups, to see which one is a good fit.)
- Are there any support groups for family members and caregivers here at this facility?
- Can you recommend resources for more information about MS? (You will probably get handouts that he was given from drug company representatives and the MS Society. Take them.)
TIP: Go to your DMV and ask for an application for a Handicap Placard and take it with you to your appointment. Before you leave his office, don't forget to ask him to sign the application.
You may not need to use it full time, but you will need it at some time. It will make your life easier in shopping centers where you have to park far from the door. Yes, exercise is good for you and you may feel good when you are walking into the store. But after you have spent an hour walking around the store, ten more minutes in the checkout, then trudging your way to your parking spot that is far away, you are going to wish you had parked closer to the door in a handicap spot.
You can always choose to put the placard in the glove compartment until you need to use it. Don't worry if you get dirty looks to those who have handicap hangtags or license plates. Those people don't know your problems and you don't know theirs.
Do what you have to do for yourself. Make things easier so you can keep on keeping on.
Getting Your Diagnosis
Diagnosing MS is not always easy if the symptoms aren't obvious. Many Multiple Sclerosis symptoms can be caused by problems other than MS.
Try not to be frustrated if months or even years go by before your illness is definitely identified as Multiple Sclerosis.
Some doctors won't diagnose Multiple Sclerosis until they are that the patient had at least two documented attacks. I had symptoms for 5 years before I found a doctor who could definitely say I had Multiple Sclerosis. It is hard for patients to have patience!
The doctor will examine you, ask you questions about your symptoms, and do some tests. An MRI is often used to confirm the diagnosis because the patches (lesions) caused by MS attacks can best be seen with this test.
ALWAYS get paper copies of your tests and DVD's of your MRI's as well as the written reports to keep with your records. Ask for copies before you leave the MRI center if it is not offered. They are free of charge in the United States and England.
I wish you the best in finding a doctor who is a good fit and in choosing a treatment plan that you feel is appropriate for you.
Published on HubPages January 11, 2012
Updated May 2019
More Famous People Who Have MS
This is not a complete list because sometimes famous people who have MS prefer to keep it to themselves so that they can remain employable. The people on this list have made it public that they have Multiple Sclerosis.
**Donna Fargo, Country Western Singer - (born on November 10, 1945) - Diagnosed with MS in 1979, Donna Fargo vowed to fight it and continue on with her career. Her MS appears to be in remission.
**Alan Osmond - (born June 22, 1949) As a member of the 1970s music group The Osmonds, Alan kept the Osmond Brothers together for almost 40 years. He married in 1974 and was diagnosed in 1979. He treats his MS with vitamins and supplements.
**David Osmond - son of Alan Osmond, David was diagnosed with MS in 2005. He was forced to put his career on hold due to a bout with West Nile Virus which doctors think triggered Multiple Sclerosis. As a contestant on Season 8 of American Idol, David had an attack of laryngitis which prevented him from going to Hollywood.
Famous People With MS
More Famous MS'ers With Short Biography
**William Hartnell - (8 January 1908 - 23 April 1975) -English actor and the first to play the lead role of Doctor Who from 1963 to 1966 which made Hartnell a star all over again. Multiple Sclerosis forced him to give up the role to Patrick Troughton in 1966. In early 1975, he suffered a series of strokes brought on by cerebrovascular disease and died peacefully in his sleep of heart failure on 23 April 1975 at the age of 67.
**Margaret Leighton –(26 February 1922 - 13 January 1976) British stage actress, 4th and last wife of Michael Wilding (Elizabeth Taylor was 2nd wife).She was diagnosed with Multiple Sclerosis in 1971 but continued to work until 1975. She became well known to younger audiences as Miss Havisham in the 1974 TV movie Great Expectations
**Jimmy Heuga – (22 September 1943 - 8 February 2010) -American Alpine ski racer who was the first man on his team to win an Olympic bronze medal for skiing as a sport. In 1970 at age 27, his ski career was over when he was diagnosed with Multiple Sclerosis because doctors told him exercise would exacerbate his symptoms and bring on flares. He founded the Huega Center for Multiple Sclerosis (Can Do MS) and challenged medical advice by developing a program to help MS'ers to maintain physical conditioning and well being with physical therapy, swimming, and a healthy diet. Researchers have since learned that this plan slows the progression of the disease.
**David Lander - (22 June 1947 - present), best known as Squiggy, from Laverne & Shirley TV show. He was diagnosed with MS in 1984 and was given no hope because there were very few medications available at that time. He hid his MS for over 15 years so he could continue to stay employed as an actor. As of this writing, he is an advocate and spokesperson for MS and the National Multiple Sclerosis Society.
**Maureen Manley – American Olympic cyclist
**Melanie Lawson - Anchorwoman, Channel 13 Houston
**Adam Riedy – American speed skater
** Roman Gabriel - American football player (Los Angeles Rams 1962-72)
**Richard Cohen - journalist (married to Meridith Viera)
** Marianne Gingrich - ex-wife of former House Speaker Newt Gingrich
**Madeline Rhue - Actress
**Louise Arters - Actress (one of the Sparkle Twins)
**Clive Burr - (born March 8, 1957) As a drummer in the British heavy metal band Iron Maiden, Clive Burr was diagnosed with Multiple Sclerosis in early 1990. The treatment left him deeply in debt. Iron Maiden staged a series of charity concerts and were involved in the founding of the Clive Burr MS Trust Fund.
** Jonathan Katz - (born December 1, 1946) - an American comedian, actor, and voice actor who is best known for his starring role in the animated sitcom Dr. Katz, Professional Therapist. In 1996, Katz was diagnosed with Multiple Sclerosis. The initial symptoms began in 1996 which he hid to be able to keep acting and when it became too much of a burden, Katz eventually disclosed it. He now speaks publicly as part of a tour sponsored by a manufacturer of medications used to treat MS.
**Barbara Jordan - (February 21, 1936 - January 17, 1996) was an American politician from Texas serving as a Congresswoman in the US House of Representatives from 1973 to 1979. In 1973, Jordan began to suffer from Multiple Sclerosis, having difficulty climbing stairs. She started using a cane and eventually used a wheelchair. She kept the state of her health out of the press so well that President Bill Clinton wanted to nominate her for US Supreme Court but her health problems prevented him from nominating her. i
**Montel Williams - (born July 3, 1956) - an American celebrity and former television talk show host. Williams had symptoms for 20 years before being diagnosed in 1990. He maintains an active lifestyle and treats his MS with medical marijuana.
**Paul Wellstone - (July 21, 1944 - October 25, 2002) Wellstone was a two-term U.S. Senator from Minnesota. He was diagnosed with Primary Progressive MS in January 2002, and died 10 months later.
**David Humm - (April 2, 1952-March 27, 2018) - a former professional American football quarterback in the NFL for the Oakland/Los Angeles Raiders, Buffalo Bills, and the Baltimore Colts. He was diagnosed with Multiple Sclerosis at age 49 in 1988, lost the use of his legs in 1997 and was confined to a wheelchair until his death in 2018.
** Frank DuBois - New Mexico Secretary of Agriculture 1989-, champion team roper.
**Fraser Robinson - Michelle Obama's father
**Anne Romney - former first lady of Massachusetts, married to Mitt Romney. Diagnosed in 1998.
**J.K.Rowling's mother (of Harry Potter books)
**Stone Phillips' wife (Host Dateline NBC)
**Richard Queen - Iran Hostage
**Gloria Estefan's father
**Dustin Hoffman's mother
I know there is a lot of information in this article, and it may be too much to absorb in one sitting. The list of symptoms is long because I wanted to provide a good comprehensive list. Don't read the list thinking you need all of them to be diagnosed with MS.
Most MS'ers will have about 50% to 75% of the symptoms on the list. My MS is not like your MS and your MS is not like anyone else's MS. It is a disease that is unique to each patient. The same goes for treatments: what works for you might not work for everyone else.
Did this hub help you in your search for diagnosing or understanding Multiple Sclerosis?
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2012 awordlover