Myasthenia Gravis Manitoba Inc. Chapter

Directors: Gary Parker Verna Kapkey Roger Ross President: Diane S. Kowaliuk Secretary: Gary Parker Treasurer: Maureen Silk Telephone Committee: George Sinclair Mary Ross Sheila Besth Social Committee Gord Mackie

Fund Raising: Verna Kapkey Sandra Penner Hospital Visiting: George Sinclair Newsletter Editor Temporary: Verna Kapkey 1-204-586-6784 Assistant Editor: Gary Parker Membership: Doreen Amadatsu Video Production: Gary Parker Coffee Committee Connie & Ken Chubaty

Presidents Message by

Diane Kowaliuk

Once again summer is upon us and we are planning vacations with our families.

But we have some very exciting news to share with our members. Due to the grant we received from the Winnipeg Foundation, this has enabled us to place our phone number in the phone book, under the White Pages, Myasthenia Gravis Inc. at 582-5456. Also the same phone number is under the Yellow Pages under Charitable Organizations.

We were also able to purchase a computer with e-mail access to communicate effectively and efficiently with our members all across the world. The e-mail address is mginc@mts.net.

Our website address is www.mginc.ca but will not be up and running until the middle of the summer as we are currently working with the designers.

We would like to extend our deepest condolences to George Sinclair in the passing of his lovely wife June. Our thoughts and prayers are with you George.

Our next chapter meeting will be held September 15, 2005 at the St. Boniface Hospital in room AG 001 & 2

Please try to attend the meeting as your presence and imput is beneficial to everyone else.

Diane S. Kowaluik

If you, or someone you know has Myasthenia Gravis and needs information on the illness, we do supply literature, in the form of previous articles, pamphlets, etc. for members and their families. Contact: Verna Kapkey at 586-6784 or  mginc@mts.net

May 2005

Myasthenia Gravis and Me

My is Paul Personius, I have had Myasthenia Gravis for eight years. In March 1998 when I was 48 years old, I started to experience drooping of my right eyelid for six to seven weeks. Three months later, my left eyelid began drooping. This lasted for six to seven weeks and it caused me a lot of pain. I went to the emergency of the hospital in The Pas, but the doctor on call didn’t know what was wrong with me.

The next day, my wife Rose, and my sister Eileen, took me down to Winnipeg, Manitoba for further medical attention. We decided to try the Manitoba walk-in Clinic before going to the emergency unit at the Health Science Centre. The nurse at the clinic told us the doctor on call was fully booked, but she was really concerned about my condition and told us not to leave the city without seeing a doctor.

She told us to go straight to the hospital.

We did so, and waited there for six to seven hours before the doctor on call was able to see me.

He referred me to a neurologist, who ordered blood tests, x-rays, a nerve test and a C.T. That is when the neurologist who specializes in M.G. diagnosed me with Myasthenia Gravis. He prescribed mestinon to relieve the double vision.

I bumped into walls and couldn’t judge open doors. I had a hard time buttoning my shirt and putting my socks on. At times I would have difficulty swallowing and breathing. My legs get weak when I climb the stairs and I have slurred and nasal speech.

Myasthenia Gravis is a touch and go experience, one that I will never forget.

For me, Myasthenia Gravis is like a life threatening disease, which makes it difficult for me to speak about my experience about this illness. I have continued to work in spite of Myasthenia Gravis, even though I have my good days and bad days as well. There are times it will go into remission and then flares up again. I do my very best to control Myasthenia Gravis, rather then having the illness control me.

Paul Personius

The Pas, Northern Manitoba.

 

Net Wellness Consumer Health Information

This article was originally published by Net Wellness, a consumer health web aide produced by the University of Cincinnati, Ohio State University, and Case Western Reserve University.

Myasthenia Gravis

What conditions might be confused with Myasthenia Gravis?

What is the difference between MG and Lambert-Eaton Syndrome?

Myasthenia Gravis causes muscle weakness that becomes significantly worse with activity. Double vision, swallowing and speaking abnormalities, difficulty walking and using the arms are common symptoms. Lambert-Eaton Myasthenic Syndrome (LEMS) may produce similar symptoms, as well as muscle aches and dry mouth, but double vision is less common. Patients may also have impotence, constipation, impaired sweating, blurred vision and difficulties with urination.

Myasthenia Gravis is an autoimmune disease in which antibodies damage the acetylcholine receptors and compromise the muscle side of the nerve-muscle communication point. LEMS is an autoimmune disease that affects the nerve and not the muscle. A thymectomy is not used to treat LEMS.

What is the relationship between a thyroid condition and Myasthenia Gravis?

Treatment of a thyroid condition (hypo or hyperthyroidism)

often improves weakness of coexistent Myasthenia Gravis.

Not all thyroid problems are autoimmune, but many are. Families that have tendencies to have Graves disease ( an autoimmune thyroid problem) and Hasimoto’s throiditis may have family members with Myasthenia Gravis. Roughly 10% of patients with MG may have some form of thyroid disease, including Hashimoto’s and Graves disease.

What is the difference between Myasthenia Gravis and Multiple Sclerosis?

Both Myasthenia Gravis and Multiple Sclerosis are autoimmune diseases, but differ in that MS affects the central nervous system (brain and spinal cord), while MG affects the nerve-muscle communication point of the peripheral nervous system. The presence of both MS and MG in a single patient is rare. With appropriate testing, your neurologist would be able to distinguish the two conditions. There is no clear connection between MG and MS.

What is the relationship between strokes and Myasthenia Gravis?

Myasthenia Gravis does not cause strokes and does not increase the risk of strokes.

What is the relationship between fibromyalgia and chronic fatigue syndrome to Myasthenia Gravis?

The causes of fibromyalgia or chronic fatigue syndrome is not known and neither is known as am autoimmune disease. There is no clear link between chronic fatigue syndrome, fibromyalgia and MG. Chronic fatigue syndrome is characterized by a set of symptoms that may have many causes (that is why it is called a syndrome). Although both are manifested by fatigue, MG causes muscle fatigue that can be identified objectively by specific muscle tests, such as an EMG. Mestinon has been used for chronic fatigue syndrome, but my understanding is that it ultimately has not been shown to be effective.

What should I know about Myasthenia Gravis and prostate cancer?

Myasthenia Gravis could worsen because of the stress of treatments used for prostate cancer. The use of medications, such as imuran, prednisone, or cyclosporine for Myasthenia Gravis should be discussed with your prostate doctor. One way to help your immune system would be to maintain a well-balanced diet and as active a life as you can within the limits of MG.

What is the relationship between Myasthenia Gravis and Muscular Dystrophies?

We are not aware of any relation between MG and Muscular Dystrophy. Muscular Dystrophies are genetic diseases and having MG does not put you at risk for developing such a disease. In fact the eye muscles, which we studied in patients with advanced DMD, are always spared, in contrast to the eye muscles in MG that tend to be affected early in the disease.

What are the relationship between asthma and Myasthenia Gravis?

I would not expect asthma and MG to be confused. They certainly should be easily differentiated with formal breathing tests, called pulmonary function tests. Asthma is common and the two conditions can coexist. MG can cause restricted chest expansion, as a secondary consequence of weakness. Mestinon, used for treatment of MG, could worsen symptoms of asthma.

What is the relationship between bladder function and Myasthenia Gravis?

Myasthenia Gravis does not affect the bladder directly. If the patient is severely weakened, it may impair the ability to walk. Mestinon may modify bladder function and cause increased urination. Some patients become so weak, they have difficulty getting to the bathroom and may become incontinent. If this is the case a patient must call his or her neurologist. However, MG does not cause a neurogenic bladder. MG affects only skeletal muscle and the bladder is made out of smooth muscle.

Does Myasthenia Gravis cause heart problems?

Myasthenia Gravis does not affect the heart. In rare patients with thymomas a cardiomyopathy (disease of the heart) may occur in association with MG. Mestinon (used to treat MG) may slow the heart rate. I am not aware of any relationship between atrial fibrillation or congestive heart failure and MG.

What is the relationship of Systemic Lupus Erythematosus and Myasthenia Gravis?

Systemic Lupus Erthematosus (SLE) is a complicated autoimmune condition that may affect the nervous system in many different ways. MG and SLE can occur in the same patient. Myasthenia Gravis produces weakness while SLE produces any combination of joint pain and swelling, rash, kidney problems, eye and brain abnormalities, and others.

There are blood tests to confirm the diagnosis of SLE.

Net Wellness.

Net Wellness Consumer Health Information

Youth In Philanthropy Program

As representatives of Myasthenia Gravis Manitoba Inc., Verna Kapkey and Mary and Roger Ross had a wonderful opportunity on May 19, 2005 to attend an evening presentation and reception at the Canad Inn Polo Park. We were invited as recipients of a grant of $1,000 from the Youth in Philanthropy Program (“YiP”). Established in 1999 as a yearly program of The Winnipeg Foundation, YiP gives Winnipeg high school students firsthand experience with philanthropy and community development, leadership and decision-making.

Along with members of the Board of The Winnipeg Foundation, we and other grant recipients gathered with some 300 students and their Teacher-Advisors, representing the student-led YiP Committees from 20 high schools. The occasion was the presentation of the 2005 YiPPO Awards to the school
committees for participation, and the announcement of the local charitable organizations selected by each school committee to receive grants, which in total exceeded $100,000. In 2004 The Winnipeg Foundation made grants, including those recommended by YiP Committees, totaling $14.7 million to 550 organizations involved in community service, health, education, heritage, arts, environment and recreation. Established in 1921, The Winnipeg Foundation has been built by donors from all walks of life to create “a Winnipeg where community life flourishes”.

The grant to Myasthenia Gravis Manitoba Inc. was given by the student YiP Committee of Miles MacDonell Collegiate. The two young women who made the presentation on behalf of their school spoke about the remarkable lady named Verna who they had met, and especially recalled her fabulous baking. Heather Ingram and Ksenia Putko visited Verna¹s home earlier in the year to interview members of the Myasthenia Gravis MB. Support Group. They learned about Myasthenia Gravis and the needs the Group faced. The resulting grant was given to defray the cost of medical alert cards and educational resources.

After the close of ceremonies, Verna presented framed individual certificates of appreciation from Myasthenia Gravis MB to Heather and Ksenia, and a certificate with both their names for mounting at Miles MacDonell Collegiate. The reception which followed provided time to speak with members of the Board of The Winnipeg Foundation and express our thanks in person. We also shared snacks and refreshments with Heather and Ksenia, who were most enthusiastic and plan to keep an ongoing connection with the M.G. Support Group. They hope to bake and help out at our Fall Bake Sale. We are indeed grateful to all those involved in this worthwhile program, and are honoured to be selected as a grant recipient.

Myasthenia Gravis Manitoba Inc.

Roger & Mary Ross & Verna Kapkey

May 19, 2005

Myasthenia Gravis Manitoba Inc.

Chapter Meetings

2005 & 2006

September 15, 2005, 7:00 PM

November 17, 2005, 6:30 PM

January 19, 2006, 7:00 PM

March 16, 2006, 7:00 PM

May 18 2006, 7:00 PM

All meetings will be held at the St. Boniface Hospital, 409 Tache Ave, Winnipeg, Manitoba In Rooms AG001 & 2.

Trivia

Worry is like a rocking chair, it gives you some-thing to do, but gets you nowhere.

Myasthenia Gravis Manitoba Inc.

Membership Fees:

$10.00 - Family

$5.00 - Per Person

Please submit your Fees or donation to:

Myasthenia Gravis Membership

c/o Maureen Silk

614 Munroe Avenue

Winnipeg, Manitoba

Canada

R2K 1H8

Please Note:

That any medical views expressed in this newsletter are those of the individual author and do not reflect any official position of the Myasthenia Gravis Manitoba Inc. Chapter.

Common Belief

Winners are not born, they are made.

The dominant force in your existence is the thinking you engage in.

There is some benefit to be had from every adversity.

Each one of your beliefs is a choice.

You are never defeated until you accept defeat as a reality, and decide to stop trying.

You already possess the ability to excel in at least one key area of your life.

The only real limitations on what you can accomplish in your life are those you impose on yourself.

There can be no great success without great commitment.

You need the support and cooperation of other people to achieve any worth while goal.

Source: Internet

Medication

Of all the problems facing older adults, taking multiple medications is probably the most serious.

Since drug interactions or not taking drugs properly may lead to serious complications, here some ways to help the elderly stay safe.

Tell your doctor about all the medications you are taking. A drug journal, or complete medication chart should include the name of the drug, the dosage, and how often you are taking it.

This includes all over- the-counter drugs, vitamins and herbal remedies as well as prescribed medications.

Use the same pharmacist whenever possible. They will check what you’re taking and be able to counsel you on potential drug interactions. Check with the pharmacist before using over-the –counter medicine, including pain medication, laxatives, cough syrups, herbal remedies, etc.

Ask about potential interactions between drugs. Certain drugs should not be taken together. Some drugs may contain the same active ingredient, which could mean getting more than the recommended dose.

Find out what you can about a drug. Know what the medication is for. Whether there are alternatives, what are the side effects, and how the drug reacts with other drugs. In most cases the pharmacist can help you.

Every spring clean out your medicine cabinet. Don’t take old medicine, they may not work and may harm you.

Dispose of prescription medications that are old or that you no longer take.

If you don’t know if a medicine is still good, ask your pharmacist.

Take all the medicines you cleaned out back to your pharmacy for safe disposal.

Source Internet

Note or interest

Everyone wants to live on top of a mountain, but all the happiness and growth occurs while you are climbing it.

I’ve learned that opportunities are never lost, someone will take the ones you miss.