Myasthenia Gravis Manitoba Inc.

Presidents Report by Diane S. Kowaliuk

Our next meeting will be held on November 19, 2009.

At this meeting we will have our annual elections. The phoning committee will be canvassing by phone prior to our meeting the vacant positions. Remember our chapter cannot function with only a few people doing all the work. If we all participate a little bit, it is not so taxing for just a few members. I ask the members for your support and assistance on these vacant positions.

Immediately following our annual elections, our guest speaker will be Dr. Andrew J. Gomori, MD. At our September meeting the support group compiled a list of questions and sent them to Dr. Gomori, he will do his research and provide a response at our meeting.

In December I realize everyone will be very busy with your Christmas shopping and preparing food for the holiday season. But once again in early January we call upon our members for support and assistance for our bake sale which will be held January 23, 2010 at Garden City Mall. We are going to try and set up on Friday, January 22, so members can bring their baking either day. Once again I know our members will not let the executive down by providing the baking and working at the bake sale.

Due to the bake sale in January our Christmas party will have to be rescheduled to another month. Suggestions would be greatly appreciated.

The executive would like to thank all the members for the wonderful support and assistance you provided us in 2009. Great job!

I would like to give each and everyone of you a pat on the back.

Diane S. Kowaliuk

My name is Ruby, 46 years of age, wife and a mother of 4 children who was diagnosed with “MUSK Myasthenia Gravis“this year. Myasthenia Gravis is a chronic neuro muscular disease which affects the strength and stamina of voluntary muscles. MUSK - Muscle Specific Kinase is the kind of Myasthenia I have. It started last year on July 2008 when I was diagnosed with high blood pressure. My family doctor gave me prescription drug for my high blood pressure. But as I was taking it I also started to feel dizzy and drowsy so I ended up trying different kinds of medication for high blood pressure. But my high blood pressure still keeps going up and down. I'm also feeling pain at the back of my head, back of my neck and started having problem opening my eyes and also developed a problem swallowing and there are also time I'm having difficulty in breathing. The sad thing every time I go to my doctor she always says there's nothing wrong with me. So I ended up getting a second opinion from another doctor. This second doctor referred me to a neurologist and an EENT. When I went to the neurologist he wasn't really able to check me because I have a really high bp during that time. He prescribed me a water pill to bring down my bp and re-schedule again for another appointment. He set me an appointment at St Boniface for a CT Scan. Then as I was waiting for my next schedule for the neurologist I also went to see an EENT specialist as I'm having pain at the back of my ear. After the doctor checked me, he said there's nothing wrong with me. Through all this times, I continuously suffer from headache, drooping of the eyelids, double vision, difficulty swallowing, and shortness of breath and slurred/lisping of speech. I've been to the different emergency hospitals: Seven Oaks Hospital, Health Science Centre, Misericordia and St Boniface. All of this hospitals, they can't find my problem. With the help of my church mate, I also was able to see other specialist like OB-Gynecologist, Ophthalmologist and Optometrist. All of them said, they can't find what's wrong with me. Only the optometrist prescribed me a new set of prescription glasses. And now I feel that my condition is getting worst even though they're telling me there's nothing wrong with me. When I went back for my next schedule with my neurologist, he admitted that he has really having a hard time with my case. Because based on the result of the CT scan, he can't see anything wrong. But he knows my condition is getting worst. He scheduled me for another set of blood test and called St. Boniface hospital to get me check with EMG and MRI. Now my neurologist really having a hard time with my case, he even referred me to another specialist a neuro-opthalmologist. He said if this specialist can't find what's wrong with me, he doubts if anyone could still find my problem. But my appointment with the neuro ophthalmologist did not immediately happen. Sometime in February 2009, I went to the emergency room of Seven Oaks hospital to complain all of my problems. They still saying there's nothing wrong with me. But this time I really feel worse. We even ask the doctor checking up on me how worse do I need to be before they admit me in the hospital. Later on we were able to convince them to admit me. Because I told them that I've been suffering with this problem for quite a while now. I was admitted in the early morning of the next day which is Monday. The next day after that which is Tuesday, I had a respiratory failure. I was transferred to the ICU for a week because I'm gravely ill. But when my condition starts to be stable, they put me back on the ward. But when I was in the ward, I'm still suffering from all the symptoms of MG which I think they still didn't know. After a week in the ward, they now told me that I will be discharged. I told them if they could reconsider because I said they still don't know what's wrong with me. They said I'm already stable and there's nothing wrong with me. But when I asked them what's the reason why I was gravely ill and was in the ICU for a week, they just answered me they don't know. They didn't even tell us what to do in case my problem comes back. Three days after I was discharged, I wasn't able to sleep for the next 3 days. My family was so concerned with my condition so they ended up calling a doctor friend of ours in our homeland to ask for her opinion. And after telling her my condition, she immediately told us to bring me to the hospital right away. On March 9, I was brought to the Health Science emergency that morning. After I was brought in the emergency and all the information was taken in the triage, I was immediately brought to an isolation room because I have MRSA which I got from the other hospital. And around fifteen minutes after I was brought into that isolation room, my breathing stop again for the second time. I stayed for more than 2 months in the MICU/IICU of Health Science where they did lots of test on me like x-ray, CT scan, MRI, EMG and lots of laboratory work. They even invited the neuro-opthalmologist that I was scheduled to see before I was hospitalized if she could come in and check me there while I'm in the ICU. After her check up, she immediately said that I'm suffering with MG. Now they were suspecting Myasthenia Gravis as my problem. And only after the result from Mayo Clinic came back, it shows that I'm positive with MUSK anti-bodies. I was given a treatment of plasma freezes twice and 3 treatment of IVIG. I stayed in Health Science Centre for almost four months. Now that I'm on the stage of trying to control my MG through medication, I'm getting better slowly but I'm still at the stage of how my body would react to my medication. Because I'm only been discharged for 3 months, so I'm still really observing myself. I'm taking at least more or less than 20 pills a day like Mestinon 30mg (1/2 tablet every 6 hrs-Pyridostigmine), Prednisone 5mg (Steroid-6 pills), Azathioprine 50mg (Immuran- 2 1/2 pills), Ranitidine 150mg for reflux acid, CPL Multivitamins, Vit B12 1000mcg (Cyanocobalamin), Vit D 1000IU, Ferrous Sulphate 300mg (3 pills), Folic Acid, Calcium Carbonate 1250mg, Alendronate (1 pill-once a week). There still times that I'm having headaches, some weakness on my neck and arms, muscle cramps on my foot and sometime muscle spasm on my back . I still can't say if this is sign of Myasthenia or just side effects from the medication that I'm taking because my next appointment with my neurologist is January 2010. My family and I have been through a lot in this trial on our life. My husband and I even thought that being pro active with my condition would prevent me from suffering this kind of situation. After those experiences we had in our life, we still know that we are very blessed because I'm still alive after those 2 respiratory failures. Because we know as Christian, the amount of trials that would be given to us would only the ones we could carry. This is the verse that I hold into it: "For I know the plans I have for you, declares the Lord, plan to prosper you and not to harm you, plan to give you hope and a future". The only thing I could say about people with MG is not to lose hope but have faith to the Lord. Because not all things can be explained by science. Like Myasthenia it's a rare kind of disease but it also important to get as much information about the disease. So you might be able to prevent it from getting worst. Also joining a support group like this one is good. So that you would know that you are not the only one suffering from it because you might even help them or in return they might even help you and help each other tackle this kind of disease. But the best thing of all is always remember that "GOD is good all the time, He will never leave you nor forsake you". If you feel that you are suffering from anything, just call on to the Lord Jesus Christ and He will listen because that's what I've had experienced. "TO GOD IS THE GLORY". Ruby.

Fall – To do list

Flip your mattress to eliminate a groove from sleeping in the same spot; this is better for your spine.

Replace your emergency water supply.

Check your pantry for emergency food supplies (and make sure you have a non-electric can opener).

Clean out and check your car, including tire pressure (which changes at different temperatures).

Check you light bulbs and replace with energy efficient light bulbs so you have enough light for the winter.

Change your furnace filters monthly.

Change the batteries in your smoke detectors.

Shake the fire extinguishers regularly to keep the chemical from sticking to the bottom.

Change your antifreeze in your vehicle to winter antifreeze.

Osteoporosis

Are You Getting Enough Vitamin D?

Most people know that being exposed to the sun's rays can be harmful (it can increase the risk of skin cancer), but they may not know there's a risk of too little sun.

Sun exposure is actually beneficial when obtained in small doses-such as 15 minutes or less several times a week. The sun's ultraviolet rays actually trigger vitamin D synthesis in the skin. Vitamin D is important because it helps us absorb calcium from the digestive system for our bones.

The days are getting shorter as winter approaches, and people are less exposed to the sun. Even if they are getting sun exposure, the winter sun is too weak to be beneficial.

A vitamin D deficiency prevents new bone tissue from hardening, a condition known as rickets in children and osteomalacia in adults. It can also result in bone loss and causes muscle weakness, which creates an increased tendency to fall.

Research studies have also found that insufficient levels of vitamin D may also contribute to developing different types of cancer such as breast, colon and prostate cancer, as well as heart disease and diabetes.

Here's what you need to know about vitamin D:

· What vitamin D is

Vitamin D is a fat-soluble vitamin found in some foods and which can be made in your body after exposure to ultraviolet rays from the sun.

· Why vitamin D is important

Vitamin D helps the body maintain normal blood levels of calcium and phosphorus. It promotes calcium absorption and helps to form and maintain strong bones.

· Who's at risk for a vitamin D deficiency?

Breastfeeding infants-Human breast milk alone doesn't provide adequate vitamin D, and parents are advised to keep infants out of the sun. So the Academy of Pediatrics recommends a daily supplement of 400 international units (IU) of vitamin D per day beginning at age 6 months, unless they are weaned to receive at least 500 ml per day of vitamin D-fortified formula.

Older adults-The skin of adults aged 50 and older does not synthesize vitamin D efficiently and the kidney is less able to convert vitamin D to its active hormone form.

People with darker skin color-The melanin content is higher in people with darker skin, which reduces the skin's ability to produce vitamin D from sunlight.

People with fat malabsorption-Because vitamin D is a fat-soluble vitamin, people with a reduced ability to absorb dietary fat, such as those with Crohn's disease, cystic fibrosis, celiac disease or liver disease, or those who have had part or all of their stomach or intestines removed (as a result of gastric bypass surgery, for example), may not adequately absorb vitamin D. People with limited sun exposure-Homebound individuals, people living in northern latitudes like New England and Alaska, and those who wear more protective clothing are at risk for vitamin D deficiency.

· How much vitamin D do you need?

The current recommendations are: from birth to age 50, people should get at least 200 IU of vitamin D a day. Adults 51–69 require 400 IU daily, and those over 70 require 600 IU. Many experts in the field recommend 1000 to 2000 IU per day and some patients need more.

The 'safe upper limit' for vitamin D is 2,000 IU per day, and higher levels may be needed for some people. Although there is a wide margin of safety, taking too much vitamin D can lead to toxicity, which through high blood calcium levels can cause nausea, vomiting, poor appetite, constipation, weakness and weight loss. It can also cause heart rhythm abnormalities and confusion."

· Sources of vitamin D

Exposure to the sun provides most people with their vitamin D requirement, because ultraviolet rays trigger synthesis in the skin.

However, the sun's rays are not strong enough in the winter and there are other ways to get vitamin D. There are some foods that contain vitamin D, such as egg yolks, sardines, mackerel, salmon, herring, fish liver oils, shrimp, chicken liver, oysters and fortified foods such as orange juice, milk and infant formula.

It's difficult to get your daily recommended amount from foods containing vitamin D, and most multivitamins only contain 400 IU of vitamin D, so most people will need an additional supplement. Internet Source

Winter Dry Skin

Winter is the season for dry skin and chapped lips because lower air temperatures and low humidity result in drier air. The dryness is made worse by forced, hot-air heating.

The dry air causes skin to lose moisture and become itchy. As we age, winter dryness becomes worse because the natural oil layer in our skin (which protects it from losing moisture) is depleted. Frequent baths or showers further remove this protective oil layer, and the cycle of winter-dry skin continues.

The most common cause of itchiness (without the rash) is dry skin. If your skin is itchy for no obvious reason, try using a moisturizer. Moisturizers add a protective oil layer to your skin and decreases the amount of moisture lost to dry air. Some moisturizers feel greasier than others because they contain a lot of oil. These types stay on longer and are better for really dry skin, but tend to feel heavy and uncomfortable. Water-based moisturizers feel lighter on the skin but they don’t stay on as long, nor do they provide the same degree of skin protection as the oilier types. Sometimes your doctor will prescribe a medication to help heal dry skin, but for the common winter itch here are some suggestions:

Lotions are good for most parts of the body but creams are best for the really rough areas such as elbows, knees, hands and feet.

Apply a moisturizer after bathing or showering. This helps keep the skin hydrated. It’s often best to bathe or shower before going to bed. Cold dry air tends to cause the moisture on your skin to evaporate. Drink plenty of water and avoid caffeinated beverages. Use a humidifier during the heating season.

Wear gloves when washing dishes or cleaning. Don’t lick chapped lips as this causes more fluid loss and more chapping.

Try to wear gloves or mittens on your hands when outside in cold weather.

If these measures don’t help after a week or two, or if you notice any red rashes or patches, the schedule a visit with your healthcare professional.

Internet Source

Myasthenia Gravis and Depression

The newly diagnosed myasthenic may react with relief, shock, grief, despair, or any combination of emotions. It takes a great deal of time to adjust to a chronic illness. Long term plans and dreams may have to change, some temporarily, and others forever. As a person becomes aware of his own personal pattern, and learns to work within it, life can become more manageable. Many physical limitations can usually be worked around or planned better, though many MG patients have to live with some amount of physical disability.

There may be a change in roles when a wage-earner or homemaker becomes partially or totally dependent. Also, treatment and medications may cause pain or discomfort. This would be stressful for a healthy person to deal with. It is even more difficult to cope with, when you are diagnosed with Myasthenia Gravis.

Depression may arrive when we fully realize that this illness may cause long-term changes in our lives. We are troubled by the loss of our health, and miss our dreams and opportunities that we cherished so much.

Depression of a minor nature may not interfere with day-to-day function, but it may make life seem dull, worthless and miserable. Serious or major depression may include a number of symptoms which signal that professional help may be needed.

Some of the symptoms to watch for are:

-Change in sleeping patterns – sleeping far too little or too much.

-Mood alterations which go on too long in relation to the cause.

-Listlessness, lack of interest in things that formerly gave pleasure.

-Inability to concentrate.

-Eating too little or too much.

-Inappropriate feeling of guilt.

-Suicidal thoughts.

-Feeling of worthlessness.

-Loss of interest in activities that were of interest before.

-Lack of energy which increases over time. This can be misconstrued as weakness, and lead to an increase in doses of Prednisone, which can worsen the situation.

If a person has more than one or two symptoms of depression for a period of more than two weeks it is time to seek help. Prednisone can cause mood swings, including irritability, insomnia and depression, and if these side effects appear they need to be addressed, with medical help. Joining a support group composed of other patients who have Myasthenia Gravis, may help the newly diagnosed myasthenic to understand and come to grips with the illness.

Internet Source

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The third edition of the book, You, Me and Myasthenia Gravis, by Deborah Cavel-Greant, is ready for sale. Contact Verna Kapkey at 204-586-6784 or mginc@mts.net

Our drug alert card has been printed “Drugs that worsen the symptoms of MG,

If you have not received this card contact Verna at 1-204-586-6784

Myasthenia Gravis Manitoba Inc.

Membership Fees:

$10.00 -- Family

$ 5.00 -- Per Person

Please submit your fees

or donation to:

Myasthenia Gravis Membership

Maureen Silk

614 Munroe Avenue

Winnipeg, Manitoba

R2K 1H8

Literature

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 1-204-586-6784 or mginc@mts.net

Please note:

This newsletter is intended to provide the reader with general information to be used solely for educational purposes, and 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.

Always consult your physician or health care professional for medical advice.