Could You Have Multiple Sclerosis?

Published January 11, 2012

Since this is an exceptionally "large" hub, I suggest you bookmark it so you can digest it in a few sittings. ::smile::

How can you know if the signs and symptoms you have are actually Multiple Sclerosis or if it is something else entirely? I hope this hub helps to 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.

Multiple sclerosis (MS) is an inflammatory, chronic, degenerative disorder which affects the nerves in my brain and my spinal cord. Myelin is a fatty substance that insulates nerves and helps in the conduction of nerve impulses. This is where the destruction happens in multiple sclerosis.

Sclerosis means scarring and hardening caused by demyelination - damage to the myelin. It slows down my nerve impulses, makes me weak, causes numbness in various places, pain in lots of places, and vision problems. My motor coordination changes every single day - some days good, some days not so good. Some days my legs are good to go, other days, I need a cane, walker or wheelchair. There is no way to know when I wake up in the morning, how I am going to be for the day. MS'ers just take it one day at a time and then - we adapt.

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 worsen (exacerbate), improve, and develop in different areas of the body. Early symptoms of the disorder may include vision changes (e.g., blurred vision, blind spots), numbness, dizziness, and muscle weakness. I have had Restless Leg Syndrome since I was four years old but it also had no name, just that horrible jumpy feeling that attacked me mostly when I was in bed. Sometimes it even woke me up during the night. My grandmother and my mother suffered with it but, for them, it was not part of Multiple Sclerosis. They both had what was termed in those days as "hardening of the arteries" which we now know as high cholesterol, and it was accompanied by diabetes. Many diabetics suffer Restless Leg Syndrome.

Multiple Sclerosis in itself will not kill you.

There is as yet no cure for MS. Many patients do well with no therapy at all, especially since many medications have serious side effects and carry bigger risks. All the problems that it causes within your body will most likely be the main contributor to cause of death.

Because MS affects each of us differently, some MS'er's will have walking problems, others will have speech problems, and still others will have memory and cognition problems. Some will develop breathing problems and still others will develop swallowing problems. All these sub-conditions contribute to our demise, but not the disease itself.

No one will ever have as a cause of death as Multiple Sclerosis on the first line of the death certificate. What docs have written there is "Complications from Multiple Sclerosis". You see, they can't say you died of MS because it is not recognized as a cause of death. But you can (and most likely will) die of the complications that come along with MS.

MS can continue steadily or cause acute attacks (called exacerbations) followed by partial or complete remission in symptoms. Most patients with the disease have a normal lifespan.

I have had MS since 1976. Now in 2011, that is 35 years. All of my married life.

I was diagnosed 3 weeks after I got married. My future husband knew I was doctoring for a whole laundry list of symptoms and that no one had put a name to it yet. I would doctor for a while, get disgusted, throw myself into work, treat symptoms as they came along - and took a different med for almost every symptom.

In another part of my life, I am a writer. I make fairly decent pin money from it. I write under two pseudonyms and also did some ghost writing for a New York publishing house. I probably won't get rich on it or make enough to be able to retire. But It is something I enjoy doing. But some days, I feel like it is wasting away.

I have noticed over the last ten years or so, that my brain doesn't work the way it always has in the past. It is clearly a sign that my Multiple Sclerosis is gradually affecting different body parts and getting worse. Sometimes I will type out my thought and when I check the screen, it says something different. A lot of times it is because my thought got ahead of my fingers. Other times it is because I am not paying attention to what I am "doing" while I am thinking it out.

I find some days I am rather forgetful - it helps to laugh it off and to refer to them as MS moments. . My family calls them Alzheimer moments . Anyway you look at it, I do forget. A lot.

So, I do a lot of revisions.

In fact, my writing day starts with reading what I wrote the day before and revising it as needed. Often my ideas will continue from there and I will be able to continue writing. Other days, my gazillion post-it notes steer the direction of my writing. I have only had one lonnnnng dry spell in all my writing years when I was ill. It seriously takes a great deal of motivation and ideas to snap out of it.

It is true, now more than ever, that MS is the most diagnosed neurological disease in young people. MS is more common in women and Caucasians. When I was diagnosed back in 1976, the average age of a MS'er was 40. I was 23.

Docs denied it was MS for 5 years because they had never seen anyone at my age with MS. Consequently, my ailment had no name to babysit it until one day, a professor of mine said that I needed to consult with a colleague of his because he said "he is a very smart man and if he doesn't know what is wrong with you, no one will." I didn't think about it twice. I asked him to make an appointment for me and he did -- for the next day. It was unheard of to get such a quick appointment in 1976 - the average wait was 2 months or more.

Multiple sclerosis is classified according to frequency, severity of neurological symptoms, how much damage has been done, and how well/quickly the body recovers from an episode.

* Primary progressive MS (PPMS) - steadily worsens with time.

* Relapsing-Remitting MS (RRMS) - episodes happen more, but with long periods of lessened symptoms between episodes. This is the remitting part of RRMS.

* Secondary progressive MS (SPMS) - something like RRMS, except episodes are increased so that there are no breaks between episodes.

* Relapsing-Progressive MS (RPMS) - continues to amass damage during flare ups and remissions.


During early stages of the disease, symptoms of MS often occur, disappear completely for a time, and then return again. There is no cure for MS and the condition can become increasingly debilitating over time. MS treatment varies depending on the type and severity of symptoms and usually includes medications.

At first, your symptoms may be brief and mild. The first serious attack usually lasts weeks or can go on for a few months.

Common early symptoms include tingling, numbness, itching, tightness, burning, shooting pain in the back and limbs (called Lhermitte's sign), difficulty walking, eye pain, and vision loss. Restless Leg Syndrome often accompanies Multiple Sclerosis.

Symptoms of the disease vary, depending on where in the body the damage occurs, and can be physically minor to major deficits.

As MS gets worse, you may have tremors and pain and feel stiff when you move. You may have problems with controlling urination (I wrote another hub on how to help with this), swallowing, and thinking clearly. MS can lead to depression. Many people with MS are sensitive to heat. Hot weather, a fever, a hot shower, or too much exercise can make their symptoms worse until they cool down.

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 disappeared during most of the term, only to reoccur shortly after giving birth. That is what happened with me. I have been pregnant 9 times and each time, my MS laid low, until either I miscarried or gave birth and then it came back with a vengeance. (PS I have two live children, now adults)

Ok, we got the technical stuff out of the way. Now this is the nitty gritty.

Here are some questions to ask your doctor (e.g., neurologist) about multiple sclerosis.

Print this list out, check off the questions you would like answered, and take it with you to your doctor appointment.

The more knowledge you have about multiple sclerosis, the easier it will be to make important decisions about your treatment and medical care.

If he/she does not have answers to your questions, then you need to shop for a Neurologist who is a MS Specialist and who can provide you with knowledge, appropriate treatment "choices" (treatments are always YOUR choice), and is accessible to you when you need him/her.

Do your homework first. Know the answers to these questions before you ask your doctor.

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 we just do not know.

An honest doctor will tell you "I don't know" to at least 3 of these questions. If he tells you "I don't know" to more than 10 questions, you might want to start interviewing neurologists who specialize in the treatment of Multiple Sclerosis so that you have a doctor who is current with the information that is available. It also helps to have a doctor who is willing to answer your questions, to listen to you when you speak, and to spend more than 5 minutes with you.

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 notepad or copybook to jot down notes and take it with you to all your doctor appointments. When you get home, you will always remember something you wanted to ask.

1. What other conditions can cause multiple sclerosis symptoms? Many other diseases mimic MS.
2. Why do you suspect that I have multiple sclerosis? Ask what the biggest tip offs were.
3. How will my condition be diagnosed? What types of examinations and tests will be performed?
4. What do tests to diagnose MS involve?
5. How should I prepare for these exams and tests? Most have little or no prep.
6. Are there any risks associated with these tests? The more invasive, the more risk. Lumbar puncture may be mentioned here.
7. Once multiple sclerosis has been diagnosed, what types of tests might I need to have on a regular basis?
8. What type of MS do I have? Ask how your type was determined.
9. How severe is my current condition? Are you having an MS flare?
10. What is the usual prognosis for people who have this type of MS?
11. How do you expect my condition to progress?
12. How might MS affect my daily life? Can I continue to work, with or without accommodations?
13. What type of treatment do you recommend? Medication, PT, diet, injections?
14. Why do you recommend this particular course of treatment? (Remember it is a RECOMMENDATION, and always is your choice in the end.)
15. Should I seek a second opinion? Why or why not? (NOTE: ALWAYS GET 2nd OPINION) If he says no, I'd be suspicious because NO doctor is infallible. What he misses, another might see. Especially if your MS is not yet a firm diagnosis.
16. Can lifestyle changes, such as diet and exercise, help slow or stop the progression of my multiple sclerosis? If so, what changes do you recommend?
17. What support resources are available to help me change my lifestyle?
18. 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.
19. Will medication(s) be used to treat my condition? (Get complete info on each)
20. What are the benefits, risks, and possible side effects from these medications?
21. What should I do if I experience serious side effects? Emergency Telephone number to call:
22. About how long might it take for my MS treatments 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.
23. How will my condition be monitored? Are there any warning signs I should look for?
24. What should I do if my symptoms worsen or these warning signs develop? Telephone number to call:
25. Can physical and/or occupational therapy help me to manage my MS symptoms? Why or why not? Obtain Physical/Occupational Therapist names, addresses & Telephone number to call. Go to facilities, look around, interview present employees and patients, ask if they think it is a good place and 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).
26. What should I do if I have trouble performing daily tasks and normal activities? See if he offers you an exercise program to do at home, walking in place, short neighborhood walks, etc.
27. What other therapies might help me manage my MS symptoms? Always know what else is available to see if the doc mentions them to you.
28. 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 - go several times and to different groups, to see which one is a good fit.
29. Are there any support groups for family members and caregivers?
30. 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.
31. Don't forget to ask your doctor to sign the application for a Handicap Placard or License Plate. Make life easier for yourself in shopping centers, etc. Re: Parking at a distance - the exercise you think might be helpful walking INTO the store, may turn out to be a bad idea when you come OUT of the store. ::smile::

Diagnosing MS is not always easy. The first symptoms may be vague, and many of the 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 MS. MS is not diagnosed unless a doctor can be sure that you have had at least two attacks. I had symptoms for 5 years before I found a doctor who could definitely label my disease as Multiple Sclerosis.

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 of damage (lesions) caused by MS attacks can be seen with this test.

ALWAYS get copies of your tests and MRI's with written reports for your records. This will save you a lot of time and frustration in the future if and when you choose to change doctors, facilities, or treatment plans and provides you with a timeline of date of onset through to present day treatment.



© Anne DiGeorge 1999, 2001, 2004, 2009, 2011

This is not a complete list because sometimes famous people with MS prefer to keep it to themselves so that they remain employable. In addition to the photos on this hub, the people on this list have made it known that they have Multiple Sclerosis.

**Donna Fargo, Country Western Singer -born on November 10, 1945 -In 1979, Fargo announced that she had multiple sclerosis, yet vowed to fight it and continue on with her career. Although seldom discussing health issues in interviews, the disease appears to have been in remission for many years. Fargo has long been a source of inspiration for others similarly afflicted.

**Alan Osmond - (born June 22, 1949) was a member of the 1970s music group The Osmonds.. Alan kept the Osmond Brothers together for almost 40 years. Throughout the 1970s, he made every crucial decision and managed to keep a steady, equal pay for his younger brothers. Because of Donny Osmond's break with the group, Alan and the other members of the group were unable to perform live for almost two years. Eventually Alan was unable to perform due to multiple sclerosis. In 2000, Alan received the Dorothy Corwin Spirit of Life Award from the National Multiple Sclerosis Society.

**David Osmond - son of Alan Osmond, he got his start as part of the Osmonds 2nd Generation. He was forced to put his career on hold due to a bout with West Nile Virus - which doctors think triggered Multiple Sclerosis. On Season 8 American Idol, an attack of laryngitis prevented him from going to Hollywood.

**William Hartnell - (8 January 1908 - 23 April 1975) -English actor, the first actor to play the lead role of the Doctor in the long-running science fiction television series Doctor Who from 1963 to 1966. This internationally popular sci-fi series made Hartnell a star all over again however multiple sclerosis forced him to relinquish 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 in 1971 with Multiple Sclerosis, but continued to work until 1975 when she died from complications of MS. Became well known to younger audiences for her role 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. At age 27, in 1970, 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, set goals and reach them, foster psychological and physical health and well being with physical therapy, swimming and healthy diet. Researchers have learned that this has proven to slow 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 given no hope as there were very few medications available at that time. He hid his MS for over 15 years so he could continue to get employment as an actor. As of this writing, he is an advocate and spokesperson for MS and the National Multiple Sclerosis Society.

**Louise Mandrell - (13 July 1954 - present) Middle sister of the singing group The Mandrell sisters, famous sister is Barbara Mandrell

**Clive Burr - (born March 8, 1957, East Ham, East London) was the drummer in the British heavy metal band Iron Maiden. Burr was diagnosed with multiple sclerosis in early 1990, the treatment of which 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 [1]) is 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: "I was working on a TV show called Ink with Ted Danson, and after every episode we would take a curtain call and I noticed that I needed a head-start." Over time, he found it difficult to hide his physical condition behind his jokes: "I was producing a show, and it was too physical a job for me to get from one location to another and I had to pretend I could keep up with everybody. My manager and attorney said, 'In Hollywood you can't be old or sick.' Hiding his condition became too much of a burden for Katz and he eventually disclosed it. Now he 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. She served as a congresswoman in the United States House of Representatives from 1973 to 1979. In 1973, Jordan began to suffer from multiple sclerosis. She had difficulty climbing stairs, and she started using a cane and eventually a wheelchair. She kept the state of her health out of the press so well that in the KUT radio documentary Rediscovering Barbara Jordan, former president Bill Clinton stated that he wanted to nominate Jordan for the United States Supreme Court, but by the time he could do so, Jordan's health problems prevented him from nominating her.

**Montel Williams - (born July 3, 1956) Montel is an American celebrity and former television talk show host. Williams enlisted in the United States Marine Corps in 1974 and completed his recruit training at MCRD Parris Island, South Carolina. While training at Twentynine Palms, he was selected for training at the Naval Preparatory School. Williams was the first African American to attend the prestigious prep school. A year later, he was accepted into the United States Naval Academy. Williams served on board the USS Sampson during the U.S. invasion of Grenada. His awards include the Armed Forces Expeditionary Medal, two Navy Expeditionary Medals, two Humanitarian Service Medals, a Navy Achievement Medal, two Navy Commendation Medals and two Meritorious Service Medals. After 12 years of military service he departed as a Lieutenant Commander in the Navy.

**Paul Wellstone - (July 21, 1944 - October 25, 2002) Wellstone was a two-term U.S. Senator from the U.S. state of Minnesota and member of the Democratic-Farmer-Labor Party, which is affiliated with the national Democratic Party. Before being elected to the Senate in 1990, he was a professor of political science at Carleton College. He served in the Senate from 1991 until his death in a plane crash on 25 October 2002, 11 days before he was to stand in the midterm US senate election. His wife, Sheila, and daughter, Marcia, also died in the crash. They had two other grown children, David and Mark, who now co-chair the Wellstone Action nonprofit group.

**Victoria Williams - (born December 23, 1958) is an American singer/songwriter and musician, originally from Shreveport, Louisiana, although she has resided in Southern California throughout her musical career. She gained fame for her descriptive songwriting talent, which she has used to immerse the listener of her songs into a vivid feeling of small-town, rural Southern upbringing and life. In 1993, Williams' life took a dramatic turn when she learned that she was suffering from multiple sclerosis.

**David Humm - (born April 2, 1952) is a former professional American football quarterback in the NFL for the Oakland/Los Angeles Raiders, Buffalo Bills, and the Baltimore Colts. He played college football at the University of Nebraska-Lincoln. Humm, 49, was diagnosed with multiple sclerosis in 1988 and lost the use of his legs in 1997, when he called the Raiders to tell them he would have to resign after two seasons as the color commentator on their radio broadcasts because he no longer would be able to travel to games.

**John Medica - Born March 18, 1969 in Toronto, ONT, Canada. He has been involved in some well known movies such as 1989 Movie Renegades. Filming Locations: Philadelphia, Pennsylvania, Toronto, Ontario, Canada Logline: An undercover cop and a Native American Indian team up to recover a sacred spear. John started acting at a young age. CBC after school shows My Secret identity 1988, War of the Worlds television show (1988), Super dave (1988). John was diagnosed with MS at age 40.

**David Humm – American NFL quarterback and sports commentator

**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) ** Frank DuBois - New Mexico Secretary of Agriculture 1989-, champion team roper.

**Fraser Robinson - Michelle Obama's father

**Anne Romney - former first lady of Massachusetts. Diagnosed in 1998.

**Roman Gabriel -LA Rams Football player (1962 to 1972)

**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 here, and it may be too much to take in all at one time. To suspect one has MS and to be finally told one has MS are two entirely different things, and can cause a floodgate of emotions. Don't read the list of symptoms thinking every one of them has to apply. The list is a CMA list. (cover my ass list). If I don't tell you a certain symptom that MAY happen, I would be negligent for not including it. Many MS'ers have 50 to 75 percent of the symptoms on the list, and not always the same symptoms.

My MS may not be like your MS. Multiple Sclerosis is a disease that is unique to each person who gets it. The way it affects me may not be the way it affects you. Some symptoms that I think are just nuisance symptoms can be devastating to you. No one knows how you feel because they do not have YOUR Multiple Sclerosis. I really hate when people say "I know how you feel." I could just scream!

In future hubs, I will be writing about blood tests and diet that I have shared in Facebook groups which some MS'ers have found helpful. More posts to come on medications, exercise, workplace challenges, your rights in the workplace, pregnancy, careers, incontinence, vitamins and supplements, lab work, and alternative medicine. Please leave your comments and questions, or send me a personal message if you wish by clicking the link on my hub profile. Thank you.