05 April 2010

What is Myasthenia Gravis (MG)?


Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction.

When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there is as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site.

Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction.

Common symptoms can include:

  • A drooping eyelid
  • Blurred or double vision
  • Slurred speech
  • Difficulty chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Difficulty breathing




Myasthenia Gravis: Frequently Asked Questions

Symptoms/Diagnosis
What is myasthenia gravis and what are common symptoms?
I think I have MG. What do I do?
How does the doctor test for MG?
Medications/Treatment
How is MG treated?
Are there medications a patient with MG should not take?
Why aren’t my medications working?
Will my MG go away?
Is it safe to switch to generic Mestinon® (pyridostigmine)?
Can people with MG receive the flu shot?
Causes
How did I get MG?
Is MG hereditary?
Is MG contagious?
General Facts
How many people have MG?
At what age do most patients get MG?
Will my children get MG?
Pregnancy
Will I be able to have children?
Work
Will I be able to continue working?
Doctors
Can you refer me to a specialist in myasthenia gravis?
Literature/Research
Where can I get information to show my doctor?
Where can I get more information on MG?
Where can I get the Practical Guide or Survival Guide?
Where can I get more information on research?
Do you have a newsletter?
Chapters/Support Groups
Do you have a chapter in my area?
Do you have a support group in my area?
Donations
How do I make a donation to MGFA?
Financial Assistance/Scholarships/Research Fellowships
Where can I get more information about Social Security Disability?
Can MGFA provide me with financial assistance for my medical needs?
What can you tell me about research fellowships and scholarships?


Me and My Dis-Ease: Living with Myasthenia Gravis

In August of last year when I was first hospitalized due to not being able to breathe, I was under the impression that it may have been just an asthma attack. And boy was I wrong. It turned out that I was having a Myasthenia Crisis. Basically the muscles around my respiratory area became so weak that I was unable to breathe. This was followed by not being able to speak coherently, swallow, open my eyes fully and other symptoms.

Now, before last year, I did not have insurance, which meant every time I went to the hospital for one of my symptoms, I was sent out the same day. All they kept telling me was anxiety this, panic attack that and while I do have experience with them both, clearly that was not the only issue. So all thru out 2007 and 2008 I was being lied to. Lied to only to become worse. In the less than a year, Dec08-Aug09 I went from 182 to 127 because I could not swallow my food and/or keep liquids down. Sad? Hell yeah. At this point I was also becoming weaker, unable to feed myself, walk on my own, do my hair, and other every day activities that we all take for granted which clearly led to depression. And I know the line "It could be worse" all to well, and at this point I am tired of hearing it.

Anywho, my lovely neurologist put me on some lovely meds called Mestinon which only suppressed the muscle weakness giving me a few hours of the day to get what I need done and then like Cinderella at Midnight I was a hot mess all over again.
So what did good ol doc do? She upped the dosage. From one pill a day to 2 1/2 pills a day. This was in Dec09. Mind you I am still falling on my face. As a matter of fact, Dec 21 while at the DFW Airport, I fell on my face, in what felt like slow motion, and no one helped me up. Fucked up? Hell yeah. Rude ass Americans. In between Dec09 and now, I have fell down stairs, in my house a countless amount of times and what has me in the hospital now? Getting out of bed and standing long enough to fall and hit my damn head. (I'm not that clumsy I swear) I have been here for a week tomorrow.

Why am I here so long? (Thank goodness for fine ass nurses) Because what they thought was only Class II MG, turned out to be, what seems like Class III or IV. I can walk again now, but they want to discuss surgical procedures to have my Thymus Gland removed. Which by the way, will not cure me. Only make life not as bad as it is now OH and it MIGHT lower the dosage of meds I need. If I do not have the surgery, I will be on the meds I am about to be released on which is 3 different pills a few times a day. Well, let me specify, I take three in the morning, one 4 hours later, another one four hours later, then three more. Yeah, I know, it could be worse. But that is 8 gotdamned pills [insert smirk here] Not to mention the IVIG i was just on for five days and will have to take once a month if I do not have surgery. (Let the doctor tell it)

Anywho if you have any questions about ANY of that just email me because I did skip thru a lot of the smaller issues. But I will be keeping you updated as often as I can. Especially since I am joining GA State Chapter for MG. I will also be posting a lot of links and info for others who have this issue.

Now, the reason why I am writing this blog
It is said that auto immune disorders are brought on by suppressed issues, ie childhood traumas, shit that has happened and we have yet to deal with, etc. Well, I am sure a lot of you are aware of my many horrors. Anywho, right before all of my symptoms started occurring I was in a bad car wreck. Bad enough that makes me want to never drive again. That along with everything I was ALREADY suppressing must clearly have something to do with my body attacking itself from the inside. Which is basically what is happening. The immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. It is all still a mystery as to WHY it happens this way but physical and emotional stress and infections can induce episodic attacks as well as aggravate the symptoms of the disorder that are already present. To read more about autoimmune disorders you can go to Medline Plus.

I heard Erykah Badu say "When you’re spending all of your time and energy, worrying or crying or fearing or thinking about the future or the past, which to me is a waste of time,you begin to borrow energy from your tissues. And because the blood is not pumping as rapidly as it should to these organs then your organs and tissues began to suffer….. The healthier your body is the better you can deal with stress and the more energy you have."

Now, when I heard organ, my mind took me straight to a conversation Enoch and I had about the seat of emotions being in the liver. With that being said, it is clear that different emotions affect different organs in our body. When we get angry, this mixes hormones and other chemicals, which go to various parts of the body, to get that area ready for action. Fear, jealousy, joy--all these emotions have an effect on our body, depending on the strength and duration of the emotion. I read that: "When the liver is overloaded, increased amounts of toxins circulate through the blood affecting most of our body systems. Our liver must transform the hormones released during emotional states, so they can be eliminated. When the liver is not functioning properly, emotional states that should come and go. stay around longer than necessary. When our environment is full of excess emotions, this puts a burden on the liver." and honestly I never thought of it like that. Every emotion I have ever had and held on to, especially the negative ones, are literally destroying me. I am destroying me. And of course there are physical levels of healing which include shit like diet, herbal and vitamin supplements, deep breathing, and body work and exercise. But there is also a much deeper level of healing which would be emotional and then of course the spiritual act of it. And lets not forget the mental because we do not need that shit lingering around in our minds. Anywho, down below are the ways of healing in in the emotional, mental, and spiritual manner and I hope it helps you as well as it will help me. I'm on my way to recovery! (I'm Rick James bitch would have sounded so much better)


THE EMOTIONAL LEVEL OF HEALING

The LIVER

  • Color - Green
  • Senses - Sight, (Eyes are external apertures)
  • Healing sound - SHHHHH

They say laughter is the best medicine for good reason. Our emotional states affect our physical body. The liver represents our desires and creativity. When healthy, we can respond to changes in a flexible manner; when impaired, we have a tendency to be overcontrolling/undercontrolling, rigid, inflexibile, irrational, irritable and short-tempered. Through visualization you can engage in a process of healing yourself emotionally. Bio-feedback allows your mind at an emotional level to change your bodies physical state. In this section we will give you two techniques for doing this.

The liver is the seat of anger, and it stores not only your anger but the anger from others, as well, especially your parents. The toxic energy stored in the liver affects the liver's function. Anger injures the liver's yin energy which results in a flare up of liver yang energy. This rising liver yang ascends to the heart and head--causing headaches, blurred vision, dizziness, and mental confusion. Irritability, a short temper, and outbursts of anger further damage the liver and create a cycle of disease and destructive emotional energy.

Since we're dealing with depression (anger), you will find the following techniques important and worthy of practice. We are going to lead you through some techniques to discharge the storage of anger in your liver. You will become acquainted with your liver and will be able to sense your liver in ways you've never experienced.

Healing Sound Technique

1. Find a comfortable, quiet place to sit with your hands in your lap (right over left). Find the location of your liver from the chart. Connect mentally to the location of the liver because the use of the healing sound and light for the liver will be employed. The better the connection, the quicker the results will be.

2. Practice your breathing as earlier explained. Bring your breath deeply (through your nose) to the bottom of your lungs and link up mentally to your liver. As you start to exhale, tilt you head back with teeth clinched, tongue to the roof of your mouth.

3. Exhale and sub-vocally (heard only internally) say SHHHHH. You may want to orally practice this sound for a while. The sound is like HUSH. Once you have used this sound for a while, it becomes easy to remember.

4. Repeat this technique at least 4 times. You may do it as many times as you wish but in multiples of 3. Your are ventilating the toxicity in your liver so the more you practice the greater the results. Practice it also during times of anger and stress.

The next technique will be coupled with the healing sound. Each organ has an associated color. The color for the liver is green--bright dark green--like emerald green. We will use two things to impact the liver-the smile-down and healing light. Think of an event in your past that was the funniest thing you've ever experienced. Just thinking about this event causes you to laugh. This is the smiling energy you'll use to help your liver. After doing the healing sound for your liver begin this technique.

Smiling Energy and Healing Light Techniques

1. Using the same breathing technique, take that smiling energy after a deep breath and hold the breath while smiling down into the liver.
2. Exhale through the mouth. Smile down into the liver as many times as possible, at least 3 times. Sense the energy in your liver.
3. Use the same breathing technique and inhale through the nose and breathe deeply into your lungs, hold, and look down into your liver and see it being covered with waves of emerald green light. Do this at least 3 times.
IT IS IMPORTANT TO END YOUR TECHNIQUES BY MOVING ANY EXCESS ENERGY INTO THE NAVEL.

On completion of the above listed techniques perform the following:

  • Stand, and walk around for a while.
  • As you are walking, use your hands and your thoughts to move the energy from your liver into your naval area.

These are some basic techniques that can detox the liver and remove the charge of anger stored there. With daily practice you'll find the depression lifting and the triggers that used to key your anger no longer working. Practice becoming the observer.


THE MENTAL LEVEL OF HEALING

The mind can be a great builder or destroyer. The system you came out of helped create destructive mind sets which must be changed. Our brain is much like a computer. The programming from our past creates predictable results. That programming starts at birth and continues until we die. For depression, the mind set, or programming, is based upon those experiences of life. Those recordings of our past experiences will play a major role in our perceptions of events and behavior. When there is another similar event, our recordings of past begin to play, and we have a predictable outcome. Part of our programming perpetuates our depression. We also see ourselves as victims of all things-childhood, parents, husbands, wives, bosses, society, and events. We learn to react to those things in a very predictable way.

Reprogramming the "Old Tapes"
Unfortunately, we can't just erase the old tapes, but we can write over them. As an example, If I have a mind set of lack, I have lack. If I believe I'm unloved, them I'm unloved, etc, etc. As earlier stated, the mind is a powerful thing. Our experiences helped create that knowing, so we have to change our experiences--new experiences that have positive outcomes. We start by learning not to react to the old tapes and substituting new tapes in place of the old. Rather than reacting, practice becoming the observer of the old tapes and place stoppers in the old tape. You can control that tape by consciously stopping the internal dialogue and placing another tape to be played. The new tape has to do with a different perspective and outcome--through visualization. Create the event mentally by seeing it with a filter. This filter cleans out the old tape and leaves only the event as it is, without the tainted projections, assumptions, interpretations, or justification. The event just is!

With depression we usually have less mental power. Because of our suppressed anger, our programs are tainted and have little happiness or joy. Create a picture of the event(s) with different outcomes--then use positive affirmations. "I choose to break free of my past and experience life from a positive perspective."

THE SPIRITUAL LEVEL OF HEALING

With depression most people are disconnected from that spiritual link. To open this link to God, practice the breathing techniques. God has always been there, but we're the one that has closed that channel. The things that have wounded us, the conditions we are in, and our negative experiences were not God's punishment. God's love for us is so great that he/she has allowed us to live out our issues without interference. The wounds are from man, not God. The parents didn't know that to the child they were God. They fell short and so does man. By doing this work you can link up with God and carry a lighter burden. Ritualize more things in your life--giving thanks for what you do have, and you'll be led to Grace. With practice and more technique you'll discover and be led into the Stillness.