How To Deal With Multiple Sclerosis

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Awordlover's advice For People With Multiple Sclerosis

Published January 11, 2012 - date is posted on this hub due to plagarists who keep stealing content.

How can you know if the signs and symptoms that 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.

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 continue in our current activities, even if we take only a week off for a break, when we want to resume those activities, we may find a deficit in energy, strength, and ability.

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Technical Jargon

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 or cushions my nerves and helps in the conduction of nerve impulses. This is where the destruction happens in Multiple Sclerosis.

The word "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 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 back then, I had no name for it, 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.

Question #1

How old were you when you were first diagnosed with Multiple Sclerosis?

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Neil Cavuto – Fox news anchor and TV host
Neil Cavuto – Fox news anchor and TV host
Annette Funicello - (born October 22, 1942) Annette is an American singer and actress. She was Walt Disney's most popular Mouseketeer, and went on to appear in a series of beach movies. When she was cast in her first beach movie, Walt Disney himself
Annette Funicello - (born October 22, 1942) Annette is an American singer and actress. She was Walt Disney's most popular Mouseketeer, and went on to appear in a series of beach movies. When she was cast in her first beach movie, Walt Disney himself
Richard Pryor, Actor, Comedian - (December 1, 1940 - December 10, 2005) In 1991, Pryor announced that he had been suffering from multiple sclerosis since 1986. In response to giving up drugs after being diagnosed with multiple sclerosis, he said: "Go
Richard Pryor, Actor, Comedian - (December 1, 1940 - December 10, 2005) In 1991, Pryor announced that he had been suffering from multiple sclerosis since 1986. In response to giving up drugs after being diagnosed with multiple sclerosis, he said: "Go
 "Teri" Garr (born December 11, 1947) is an American film and television actress. In October 2002, she publicly confirmed that she was battling multiple sclerosis. Her career breakthrough came in Mel Brooks comedy Young Frankenstein (1974). Her most
"Teri" Garr (born December 11, 1947) is an American film and television actress. In October 2002, she publicly confirmed that she was battling multiple sclerosis. Her career breakthrough came in Mel Brooks comedy Young Frankenstein (1974). Her most

Am I Going To Die of MS?

Multiple Sclerosis in itself will not kill you. You can read Thomas's story by clicking on the link.

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 Multiple Sclerosis 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 as of this writing. But you can (and most likely will) die of the complications that come along with MS. Keep in mind, that Multiple Sclerosis is an autoimmune disease. Autoimmune diseases attract each other -- if you have one, it is more than likely you will acquire another during your lifetime. I have Multiple Sclerosis, Crohn's Disease and Rheumatoid Arthritis - all autoimmune diseases -- all treated with steroids for flare ups.

MS can continue steadily or it can cause acute attacks (called exacerbations) followed by partial or complete remission in symptoms. Most patients with the disease live 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. I took a different medication for almost every symptom/side effect. Oh, the many bottles lined up on the kitchen counter!

In another part of my life, I am a writer. I make fairly decent pin money from it. I write under my own name and also two pseudonyms. I 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 have voice hoarseness, where my voice comes and goes at will, right smack in the middle of a sentence! Swallowing has become more of a problem in the last 15 years, so that I need to monitor the consistencies of the foods I eat and drink.

Even sucking on a Hall's cough drop can be disastrous if I am speaking to someone at the same time. It is all a matter of keeping my attention on the task at hand - talking without eating (or sucking on a Hall's), talking without drinking or immediately after a swallow.

I always use a straw with all drinks, and that helps to avoid those embarrassing moments when fluid will dribble from the corner of my mouth because some days one side of my face is more cooperative than the other. I eat bite size portions and concentrate on chewing food thoroughly so I don't choke because if I tale a breath in at just the wrong time when I was swallowing, it causes serious problems (choking, aspiration, sputtering). To swallow, I use chin tuck a lot.

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 on anything I write. And I make lots of notes. EVERY WHERE! I write stuff down whenever the thought comes to me, because if I don't, within seconds, the thought is gone and rarely returns.

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 going through recovery from a hysterectomy. Any assault on your body can cause your MS to flare and my hysterectomy surgery was no different. Many MS'ers find recovery times are far longer than what doctors quote them before a procedure. So between the flare up, the recovery and the funk that came with it, I didn't want to do anything. All my activities were put on a back burner while I relearned how to walk, eat, swallow, concentrate, and simple everyday tasks.

It really takes a great deal of motivation and ideas to snap out of it to get back to your normal self.

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. Now, many are being diagnosed sooner, even children under the age of 12.

It is amazing to me how more accepting the medical community has become in diagnosing MS (and other neurological diseases), and not sticking to the rigid guidelines of yesteryear in order to make a diagnosis to put a patient on the road to treatment.

Many patients suffered for years dealing with the symptoms, only to find that if they had received treatment sooner, maybe they could have staved off some of the worse of symptoms so that quality of life would have been better.

Hindsight is always 20/20, but fortunately nowadays, docs are beginning to think outside the box when a patient presents with symptoms. All diseases should be on their list for consideration, regardless of age and how many checklist symptoms they have.

By that I mean, years ago, you had to present (exhibit) with so many symptoms off the MS checklist for your disease to be diagnosed as MS and now, the powers that be are allowing docs to determine by observation, clinical tests, and exacerbations without regard to age.

Docs denied I had MS for 5 years because they had never seen anyone at my age with MS. Consequently, my ailment had no name 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.

Question #2

What type Multiple Sclerosis were you diagnosed with?

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DR KATZ, Professional Therapist
DR KATZ, Professional Therapist
JONATHAN KATZ (on left), born 1 December 1947 and diagnosed in 1996 while working on a TV show. He hid his MS until it was just too hard to keep it a secret. Now gets around with a motorized scooter
JONATHAN KATZ (on left), born 1 December 1947 and diagnosed in 1996 while working on a TV show. He hid his MS until it was just too hard to keep it a secret. Now gets around with a motorized scooter
Clay Walker – American country music singer, born 19 August 1969. Diagnosed in 1996.
Clay Walker – American country music singer, born 19 August 1969. Diagnosed in 1996. | Source

What Type of Multiple Sclerosis Do You Have?

If you don't know which type of Multiple Sclerosis you have, it is important to know so that you get the appropriate treatment. Some drugs treat one type but are not good for another type.


KNOW WHICH TYPE YOU HAVE - GET THE APPROPRIATE TREATMENT

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.

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

2. Relapsing-Remitting MS (RRMS) - episodes happen more, but with long periods of lessened symptoms between episodes. This is the remitting part of RRMS. The link discusses To Tell or Not To Tell after you are diagnosed.

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

4. 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 you have and severity of your symptoms and usually includes medications, alternative (complementary), psychological and chiropractic treatments.

Symptoms of Multiple Sclerosis

Your symptoms may be brief and relatively mild, or they can be down for the count debilitating. The first serious attack can be quick or it can lasts weeks up to a few months.

Common early symptoms include tingling, numbness, itching, tightness, burning, shooting pain in the back, between your shoulders 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 most damage has occurred, and can show 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 the linked 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'ers often have trouble maintaining comfortable body temperature and find wearing cooling vests, ice packs placed in strategic places on the body, and cool cloths on wrists and ankles very helpful.


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 the pregnancy, 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)

Symptom
Examples
Ask Yourself
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?
Behavioral changes
mood swings, depression
Is it out of the ordinary for you?
Cognitive dysfunction
impaired memory, reasoning, concentration
Do you have exaggerated Alzheimer's moments
Facial numbness
Can come and go
Always report as it can be sign of stroke, etc.
Motor abnormalities
muscle weakness, spasticity, spasm
Do you have Restless Leg Syndrome? Or Restless Arms?
Sexual dysfunction
erectile dysfunction, sexual inactivity
Changes in patterns, painful intercourse
Vision abnormalities
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
Fatigue
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?
Muscle problems
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)?
Sensory problems
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
Balance problems
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?

Question #3

How many MS symptoms on the list apply to your symptoms?

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Do Your Homework

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, medication regimen and future 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.

DON'T FORGET to ask your doctor to sign for a handicap placard hangtag or license plate. Even if you don't use it each time, it is good to have for those days when you will "need" it. Multiple Sclerosis is very unpredictable.
DON'T FORGET to ask your doctor to sign for a handicap placard hangtag or license plate. Even if you don't use it each time, it is good to have for those days when you will "need" it. Multiple Sclerosis is very unpredictable. | Source

Questions for Your Neurologist

  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 is involved in the procedures and tests you will do? (Know the step by step so you are not wondering or worried about anticipation)
  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? (Especially important if you are 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? What types of accommodations can you offer to help me stay employed in my job?
  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 it is always 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? (Get handouts on each of the offered medications and go home and research them if you have not already done so)
  21. What should I do if I experience serious side effects? May I have your Emergency Telephone number to call?
  22. 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.)
  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? (Remember to get the emergency 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 (friend, relative, etc) - 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 here at this facility?
  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 in shopping centers or parking lots - the exercise you think might be helpful when you are walking INTO the store, may turn out to be a bad idea when you come OUT of the store. ::smile:: You can always choose to put the placard in the glove box until a time comes when you know you need to use it. Don't worry if you get dirty looks to those who have handicap hangtags or license plates. These ignorant 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.

This is a 2010 MRI with Multiple Sclerosis brain lesions.  The doctors stopped counting after 23 lesions.
This is a 2010 MRI with Multiple Sclerosis brain lesions. The doctors stopped counting after 23 lesions. | Source

Getting Your Diagnosis

Diagnosing MS is not always easy. For some people, the first symptoms may be vague, and for others they can be devastating. 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.

Now, in the 21st century, Multiple Sclerosis may not be 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. 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 of damage (lesions) caused by MS attacks can best be seen with this test.

ALWAYS get copies of your tests and MRI's with the written reports to keep for your records. Copies of your MRI comes in the form of a DVD of your MRI that you receive before you leave the MRI center - ask for it if it is not offered. The written report comes a few days to a week later. Patients do not automatically receive the DVD or the report. You must ask for them - they are free of charge in the United States and most countries. This will save you a lot of time and frustration in the future if and when you move to a new city or state, choose to change doctors, facilities, or treatment plans and it also provides you with a timeline of date of onset through to present day treatment.

I wish you the best in your search for diagnosis, a doctor who is a good fit and whatever treatment you feel is appropriate for you.



© Anne DiGeorge 1999

Published on HubPages January 11, 2012

DONNA FARGO-  Born November 10, 1945
DONNA FARGO- Born November 10, 1945 | Source
ALAN OSMOND-  Born June 22, 1949, has 8 sons, one of which also has MS (David)
ALAN OSMOND- Born June 22, 1949, has 8 sons, one of which also has MS (David) | Source
DAVID OSMOND -  Son of Alan, David was on American Idol in Season 8
DAVID OSMOND - Son of Alan, David was on American Idol in Season 8

More Famous People Who Have MS

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 HARNELL- The first DOCTOR WHO
WILLIAM HARNELL- The first DOCTOR WHO
MARGARET LEIGHTON- Last wife of Michael Wilding (Elizabeth Taylor was his 2nd wife). This photo is from 1971 movie "The Go-Between"
MARGARET LEIGHTON- Last wife of Michael Wilding (Elizabeth Taylor was his 2nd wife). This photo is from 1971 movie "The Go-Between"
JIMMY HUEGA, Olympic ski team Bronze medal winner. Diagnosed in 1970 at age 26. Founded CAN DO MS
JIMMY HUEGA, Olympic ski team Bronze medal winner. Diagnosed in 1970 at age 26. Founded CAN DO MS | Source
DAVID L LANDER (Squiggy from Laverne & Shirley) - shown on left. Diagnosed 1984 and was told it was hopeless.
DAVID L LANDER (Squiggy from Laverne & Shirley) - shown on left. Diagnosed 1984 and was told it was hopeless. | Source
Sister of Barbara Mandrell.
Sister of Barbara Mandrell. | Source


**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.


Other Noteworthy People Reported To Have Multiple Sclerosis

**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.

**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

An Afterword from Me

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 to you.

This list is not all encompassing; I am sure there are more symptoms that could be added. I just wanted to include every possible known symptom which MAY happen so you would have a good comprehensive list.

Many MS'ers have 50 to 75 percent of the symptoms on the list, and not always the same symptoms or the degree of severity.

My MS may not be like your MS. Multiple Sclerosis (you can read about Vitamin D therapy on the link) 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 Yahoo and 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.

Thank you for visiting my hubs.

Multiple Sclerosis

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This hub was updated October 3, 2013 by Fiona Powers, a member of awordlover's team

Updated 2/3/2014 by Rachael O'Halloran to replace pixelated Copyscape logos and provide photo attribution.

© 2012 awordlover

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Comments 25 comments

dinkan53 profile image

dinkan53 4 years ago from India

Lot of information is already here about MS and the blood test and diet will make it perfect. I appreciate the list of famous people who have MS. thanks for sharing. rated up and useful.


awordlover profile image

awordlover 4 years ago Author

TYVM dinkan53 for your comment and ratings. Lab work hub is a WIP (work in progress) and diet hub is still a glimmer in my eye. :-) But I'm working on it. TYVM


awordlover profile image

awordlover 4 years ago Author

There have been over 50 views in two weeks. Thank you to everyone who has stopped by to read this hub.


Tams R profile image

Tams R 4 years ago from Missouri

I've cycled through these symptoms for over 10 years now. It seems I have long bouts of doing well with only a couple and then I seem to have trouble with them all or almost all. I've asked Dr.'s about MS specifically and heard all kinds of things. The last doc a couple weeks ago told me she thought I had inflammation and put me on 500mg of Naproxen. I'm so frustrated. Hot showers or baths seem to be solid triggers, but lately it doesn't even take that.


awordlover profile image

awordlover 4 years ago Author

Tams, you need to go to a neurologist who specializes in Multiple Sclerosis. I see you live in Missouri. Go to the biggest city near your home, and then to the largest TEACHING hospital there. Get an appointment to their Neurology service, asking who specializes in the treatment of MS. You will get a full workup and a very thorough exam including tests, which should include lumbar puncture, MRI, Evoked Potential, and some blood work. Check back or email me if you want to share results and if I can help interpret them better for you. TYVM for your comments on my hubs and keep in touch.

Anne


Tams R profile image

Tams R 4 years ago from Missouri

Anne, I am curious. I had an MRI about 15 years ago for migraines. Nothing showed up other than a brain bruise from an auto accident.

Do the lesions from MS show up over time or would they have been there?


awordlover profile image

awordlover 4 years ago Author

Lesions occur over time, usually when in episode. It is important to have a baseline MRI, so that future MRI's can be compared against it. Yours from 15 years ago was a completely different machine than the MRI's of today. I'd advise getting an updated MRI, with and without contrast, preferably while in flare up or showing symptoms. MRI should be first on list of tests, lumbar puncture should be the last item on list. I started out with 9 brain lesions which increased to 16 lesions over a 12 year period. I now have over 30 lesions, some are less pronounced than others, which means that the area they appear in is where I am affected with symptoms. For me, that is speech, memory, sensory (heat/cold) and motor coordination. For me, the symptoms get better with using steroids, and subsequent MRI's show some lesions fade a bit. Mine have never gone away all together, they just fade. Because of how old your MRI is, I would hazard a guess that a new updated MRI will give you more precise answers. Get that appointment and get started! Good Luck to you.


Tams R profile image

Tams R 4 years ago from Missouri

Thank you for your advice. I'm seeing the doctor again in 3 weeks and I will mention these to her along with a request for referral to a neurologist. You mentioned speech which interests me as I will go through spells of my words getting all tangled up and I sound unintelligible also hoarseness and stuttering. Suddenly they will clear up sometimes completely.


awordlover profile image

awordlover 4 years ago Author

Tams, I have almost no voice left. Hoarseness and word fishing are part of my every day life. Sometimes I trip over words so that it looks like they are in a hurry to be said, only to come out as garbage. Lesions near my speech center in brain is cause. If you want to chat after your results come in, email me and I can better answer you that way. Click CONTACT awordlover on profile page and it takes you to an email form. :-)


Tams R profile image

Tams R 4 years ago from Missouri

Anne, I surely will contact you as soon as I know something. Hopefully they won't drag it out forever. I'm sorry you have to live with this.


danatheteacher profile image

danatheteacher 4 years ago from Pacific Northwest

Great informative and down to earth hub on MS - I'm dealing with a possible diagnosis of this right now and hubs like this are helping me deal. Thank you!


Becky 4 years ago

Hi. Thank you for writing this. It has helped me a lot. I think I may have MS. Not sure yet. I have had signs over the years and they've either been unexplained or gone away. What has brought it back to focus is that I have passed out for no apparent reason twice in 3 months and had a bad fall at work during that time as well.

When I was 3 - I hit my head 3 different times - one resulting in a bursted blood vessel. Docs told Mom that I would be fine. Since then I have suffered from often debilitating headaches. I am considered legally blind - but it is corrected with glasses. But I sometimes have blurry vision or see a dark floaty spot in my eye - which I was told was nothing to worry about. I often lose my balance - my dad called me Grace (short for graceful) - but it seems to happen more often. I often drop things - like my keys for no apparent reason. A few years ago I developed tingling - needley feelings in my arms-hands and fingers - I was told this was carpel tunnel. I have always had low blood pressure - but have had periods where it is extremely low. That is what they are thinking is causing my falls.

I guess I am telling you all of this - but I guess I am wondering if you could tell me if I am imagining things or if what I fear could be true. Any help is muchly appreciated. Hugs!


awordlover profile image

awordlover 4 years ago Author

Hi Becky,

The first thing you need to do for yourself is to find a Neurologist who specializes in Multiple Sclerosis. Call your local teaching hospital (or the hospital who takes your health care plan) and find out who the head of Neurology is and then locate someone in his practice (usually they have 5 or more docs) whose interest is Multiple Sclerosis.

This is the doc who will be the most up to date and will have the MS mindset while he is examining a patient for MS - that is what he will be looking for uppermost.

Before making an appointment, interview his staff telling them that you are looking for a new neurologist who has that specialty and ask if he is taking new patients and if he takes your insurance.

After that, you should be in good hands and if at any time you feel you are not getting answers, or if you are remaining in the same place (medically speaking) as you were when you started with him, then change doctors again.

As an aside, I went to 32 fertility doctors before I found one who could be as persistent as I was in achieving my goal of having a 'live' baby even though the odds were against me.

Getting a diagnosis for MS and treating it is no different.

I often advise patients to change doctors if they do not feel they are getting up to date treatment or if a doc insists that ONE type of treatment is the ONLY treatment for you, because it is not.

There are many ways to treat MS and because each of us deals with MS different, the treatments work differently on each of us. What works for one person may not work for another.

Good luck in your quest and please check back and leave a note on your progress.

Anne


perky1913 4 years ago

I have had MRI's not leasions to be seen. Yet I have all the othe symptoms. See doctor after doctor. I am 60 years old and now have a young nephew with MS. Where do I go from here?


awordlover profile image

awordlover 4 years ago Author

Hi perky1913 - did you have a lumbar spinal tap (lumbar puncture) in the last year? Did your blood work rule out the top autoimmune diseases (along with neuro and rheumatological)? If your RA factor is in normal range, ask for the Lyme Titre blood test as well as C-ANCA. After this information is studied, your neuro should be able to look in different directions so that he can zero in on a list of diagnosis to investigate. MS mimics so many other diseases, that you may not even have MS at all. There are no lesions on your MRI, but did the report mention small foci white matter? If it did, you may simply have 'white matter disease" - the lesser of all the big names and it is treated with physical and occupational therapy which is ongoing to keep symptoms at bay and keep functionality uppermost. Remember, it can take years to get a neuro diagnosis because so many are similar to each other. Let the docs take their time - you don't want to start treatment for one disease only for later tests to prove you don't have that disease at all because the later test results show it to be something else entirely. It is a long arduous process and not for people who don't want to stick it out for the long haul. But be persistent at each visit. Get on the internet and read up on tests and new developments - make sure you have at least half of the symptoms on the list. Then, TELL (don't ask) your doc that you want a particular test done bec you have over half the symptoms and to make sure all your bases are covered. I wish you good luck in getting your diagnosis.


DDE profile image

DDE 4 years ago from Dubrovnik, Croatia

An interesting Hub with lots of information on the topic and of others too voted up!!


marie 4 years ago

I have all symptoms of MS , my MRI was negative but nerve conduction study show nerves damage, so do I have it or not ? I feel like I'm crazy sometime , how long that take to get a answer? I have to see a second neurologist in 2 months.


awordlover profile image

awordlover 4 years ago Author

Marie, getting a diagnosis is the hardest part and the longest part. It is not easy; it is downright difficult and stressful, almost as stressful as having the actual disease.

Hang in there with the docs until you find a doc you are comfortable with and whom you feel treats you like a person and not a disease. Bedside manner classes are not high priority in medical school. LOL

As for your question "Do I have it or not?" Many times MS doesn't show up on MRI. The diagnosis is made by documenting frequency of episodes, physical observance of your symptoms by a medical professional and by RULING OUT all other diseases.

MS mimics so many other diseases that it makes it one of the hardest diseases to diagnose because it could be any of over 500 other autoimmune diseases.

If you have just started out on the path of getting a diagnosis, try to get as much information as you can from internet, libraries, doctor handouts and consultations about how it affects different people differently, so that you are well educated as to what the disease involves.

YOU will know BEFORE the docs TELL YOU that you have MS or not because you are more in tune with your body. With all your research and knowledge, you will be able to make informed decisions when the time comes that you are presented with MRI and/or other testing results.

Read my other hubs on MS and you can get a sense of what the symptoms are because they ARE different for everyone.

Read other hubbers who write about MS and you will be well on the road to enlightenment about the disease.

I can't tell you IF you have it or not, but I can tell you that the more educating yourself that you do and the more information, you will be better equipped to deal with answers that finally do come your way and you will be able to tell the difference between good medical advice and bad medical advice.

Because there are docs out there who do give bad medical advice, get people started on MS drugs very quickly - almost as soon as they tell you that you do have MS (usually because they get some financial consideration from the drug companies for getting patients on their drugs).

There are docs who make one diagnosis (of MS or any other autoimmune like Lupus or Fibromyalgia, etc.) and then STOP and do not investigate any further.

Ten years down the line - you've been taking injections for MS, dealing with all the daily side effects, doing untolled damage to your organs, totally turn your life upside down, and then you find out you didn't have MS at all but it was something else like Sjogrern's Disease or Wegner's.

So as long as tedious as the road to diagnosis is, it is the most important part because you need to be SURE. Being SURE takes a long time.

If the first doc you went to said it was MS, and you stopped with him without getting second or third opinions, you would not be doing yourself justice. So just because the first few docs didn't say YES YOU HAVE MS, consider it a blessing that they want to be sure before they commit you to a lifelong disease with or without medications and a total lifestyle change for the future.

Good luck in your journey to diagnosis. Please stop back and comment how you are doing.

Anne (awordlover)


Marie g 4 years ago

I see my doctor for the result of blood test for lupus . the test come back positive . but what I don't understand , the symptoms I have it's not the one from lupus but the one from MS . my doctor will send me to see a rheumatologist and I have to see a neurologist to . do you thing . can those to disease be similar at one point or not . thank you so much to answer my question , it's so hard sometime to deal with this .


awordlover profile image

awordlover 4 years ago Author

Marie, many diseases mimic MS - the disease looks like MS, acts like MS, shows up on tests to be MS but can be any of the other Autoimmune or Neurological diseases. I don't know where you live, if this is available to you or not, but if you can get a Neurologist with a Sub-Specialty in Multiple Sclerosis, that would help to rule it out because he/she can zero in on your symptoms and how you look to him (walking, talking, mannerisms, interviewing you). A Rheumatologist will rule out all the diseases that are NOT Multiple Sclerosis. I know it is frustrating, but hang in there. It is a very long process to get to diagnosis and it is not easy. Just remember to treat your symptoms with medications, diet and exercise and don't commit to any long term medication regimen that specifically treats any one disease UNTIL THEY ARE SURE you actually have THAT disease. Starting medications that have to be injected or taken orally that target a disease that later down the line you find out that you don't have can do serious damage to your organs and actually mask the very symptoms that the docs need to see to determine what disease you have. So treat the nuisance symptoms - the ones that inhibit your quality of life, the ones that make it so you can't function - but don't give in to any doctor that says "we need to get you started on a "disease modification drug" (DMD). Why? Because it "modifies" the disease, so that it becomes less prominent in your life symptom-wise and that is good for you healthwise, but IF YOU ARE STILL in diagnosis stage (without an actual name for what you have - definitive diagnosis), then you don't want to "MODIFY" anything because then the symptoms for whatever disease you have will also be MODIFIED so that it makes it 100x harder for a doc to determine what you have. I hope that makes sense. Treat the depression, anxiety, restless leg syndrome (if you have it), numbness (neuropathy), burning, stabbing sensations - all these can be treated with medications that won't mask another disease while you are still looking for a diagnosis.

Good Luck to you, and please check back often.

Anne

awordlover


lindsey 4 years ago

I have just about 80% or more symptoms if not more of MS... I JUST WANT ANSWERS I THINK I HAVE IT


Dragonfly61 3 years ago

Thank you so much for breaking the symptoms down into a table. I copy and pasted into an Excel spreadsheet and then created a column to recount my symptoms. At the risk of my family thinking I am a hypochondriac, I am quite sure I have experienced at least 75% of these symptoms. Much like others stories, I have not put a lot of stock in anyone flare up, but looking at the last 10 years especially I have lots of episodes. Luckily my husband and I just naturally adjusted to my chronic fatigue. I worked a desk job, but did nothing else. He cooked and shopped and we paid someone to clean the house, often coming home so exhausted I went right to bed. In 2010 I moved to Alaska and recently been diagnosed with Vocal Cord Paralysis by an ENT. I am scheduled for a CT scan soon. Regardless of the results I will be asking for a referral to a Neurologist to obtain an MRI. I will be taking my spreadsheet with me!


Rachael Bull 3 years ago

In 2001 I had serious pain in my eyes. Turning them from side to side to see objects was very painful. I was a full time teacher at the time, which s an extremely stressfull occupation. I put my problems down to tiredness. During August 2001 I continued with planning for he following September. Two weeks later, over a period of five days I went totally pitch black blind. This is actually a dreadfully frightening experience because no one actually believes you. The doctor and the NHS were brilliant, together with my husband. On New Year Eve, following a bariety of tests I was diagnosed ith MS. I was really frightened. We I goung to di really soon. Lack of knowledge and complete fear old m hat I was.


MySwanSong profile image

MySwanSong 3 years ago

One of my granddaughters was recently diagnosed with MS and until I read your hub, I had no idea how involved the symptoms were. Thank you for being so detailed in this hub. To anyone searching or recently diagnosed, your hub is a gold mine. I noticed this says the hub was updated by awordlover's team. I hope to see more hubs from you or your team soon.


Yvonne Decelis profile image

Yvonne Decelis 3 years ago from Boston, Massachusetts

Thank you for this - very informative (I am writing a book about MS and Fibro (both of which I have))! I am voting this up and useful (and interesting)!

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