One of the things I noticed when doing
research on this disease and talking to various people was that there seems to
be a big difference between what I've read, heard and am experiencing.
According to popular research and
information, most MG patients can lead normal lives, never have a crisis (but
could), have no pain associated with their illness, never die, are never
immobile and co-exist with everyone else in a normal, happy manner. Yeah, right.
Truth is, myasthenia gravis will affect
all people differently. Some symptoms may be consistent with other people but
basically, this is a unique illness that will create its own identity with your
body.
Statistically, they are right. MOST
people (90%) can EVENTUALLY be stabilized, EVENTUALLY lead fairly normal lives
and most MG patients (90%) don't die from the disease.
What they don't tell you is:
Myasthenia Gravis, once it "hits",
takes between 1-3 years to mature to its fullest state. This is the most
dangerous time and the most likelihood of having complications and a crisis.
The faster MG matures/shows itself,
the more likely you are to have problems.
Most patients will experience exacerbations
in which they are too weak to function.
ONE IN TEN WILL HAVE A BREATHING CRISIS AT SOME POINT DURING THEIR ILLNESS.
You will NOT be able to work as you
once did with MG. You will either not be able to work at all, work only part
time or will have to alter your schedule, seek a different job/job duties, or
have some type of accommodation.
You have, at some point, a chance at
remission, especially after a thymectomy.
It could take up to 18 months
(sometimes longer) before the benefits of a thymectomy are noticed. The
maximal favorable response generally occurs 2 to 5 years after surgery.
Erb-Goldflam syndrome is commonly used to define the type of
myasthenia gravis that causes some paralysis, known
myasthenia gravis pseudoparalytica. This is the "bulbar" aspect of MG.
(The term "bulbar" symptoms refers to weakness in muscles innervated by
the cranial nerves V, VII, IX-XII. These symptoms include facial weakness,
difficulties in chewing, swallowing (dysphagia), articulation
(dysarthria), and breathing and weakness of the neck muscles.) This is NOT
COMMON and affects approximately 10% of those with generalized MG.
"Syndrome characterized by
ptosis,
strabismus, occasionally by complete
ophthalmoplegia externa, weakness of
masticatory muscles,
dysphagia,
dysphonia, and general muscular exhaustion after slight activity.
Occurs in both sexes at any age, with a male to female ratio of 1:2,
most commonly with onset in early middle age. It is due to the presence
of circulating antibodies to acetylcholine receptor (AchR) and faulty
synaptic transmission at the myoneural junction. Initially, the symptoms
may last for short periods, then disappear, to return a few weeks later,
becoming more pronounced. Mastication and swallowing difficulty may lead
to weight loss. Weakness of neck muscles occurs in advanced stages.
Death usually takes place within 2 years."1
You will have to deal with the stages of grief....you will grieve similar to
the death of a loved one.
Though symptoms of chronic illnesses differ, people with them are united by
the denial, anger, fear, hope, and acceptance and other feelings they bring.
Below are the five stages that people typically go through when they find out
they have a chronic illness. Not everyone goes through these stages in the same
order and it is common to go back and forth between stages as your physical
health improves or worsens.
No matter what stage you are in, just accept that this is where you belong,
go with it, and feel all the emotions you need to feel in order to move to the
next stage. Don't rush this process. Let it happen naturally.
If you believe that you are stuck in one of the first four stages
permanently, you may want to consult with a therapist. We all have problems that
we need to cope with besides this illness, and they can sometimes prevent this
process from occurring naturally.
Denial. Any change or loss in your life is likely to bring denial, and
learning that you have a chronic disease can bring large doses of it. Someone
in denial may believe a disease can't hurt them. They may ignore their
doctors' advice that could help keep the disease under control. In the case of
people with diabetes that may mean refusing to take medications or eat a
proper diet. On the other hand, some people quickly accept a disease and turn
their attention toward healing. These people stay abreast of medical advances
and work with doctors to keep the disease in check.
Anger. What often fuels denial is anger--anger that an individual was the
"one in 1,000" to get a disease. Anger may also be directed inward, with an
individual blaming himself or herself for having the illness. The best way to
minimize anger is to find outlets for it. Writing in a journal, attending a
support group or meeting with a counselor are constructive ways to express
anger. Anger is normal and can take a long time to work through. Sometimes a
small part of anger stays with you throughout the entire illness.
Fear. Often underlying anger is the fear that comes with having a disease
that can't be cured. People with chronic illnesses may start to view life
through a "telephoto lens" instead of a "wide-angle lens". They stop planning
ahead or making life changes because they believe they won't be around much
longer. Fear is often enhanced when people know little about a disease, so
combating it often begins with education. The more a person learns about a
disease, the more they feel in control of it. Fear also occurs when you lose
faith in your ability to fight and to believe in the plan of the Universe.
This is the most important stage to work through. Fear does no good. It only
causes toxins in your body that will make you sicker. Believe in the Master
Plan and let the fear go as soon as you can. It will come back, but don't let
it take over. Tell it that it is a useless feeling and that you are stronger
than it is.
Grief. Feelings of grief and loss are common because chronic diseases
bring life restrictions that others don't have to face. These may include no
longer being able to participate in activities once enjoyed, like eating a
favorite meal or playing catch with a grandchild. Grief can cause feelings of
inadequacy and lead to withdrawal and isolation. Focusing on activities that
remain unaffected by an illness can help people overcome these feelings. Those
who refuse to think of themselves as 'sick' will have a more positive outlook.
Joining a support group can also help. Groups allow people to meet others with
the same disease who are still active and accomplishing goals.
Acceptance. Though managing a long-term illness can bring emotional
upheaval, it also brings the triumphant feelings and strength that come with
overcoming obstacles. Success comes in a variety of forms, whether it's
controlling a disease with positive thinking, biofeedback, or physical therapy
so well that less medication is needed or accepting that the illness has
irrevocably changed your life and some of it is very, very good. With each
success comes the confidence that you're able to live a full, rewarding life
and maybe even a more meaningful life than if you hadn't gotten the illness.
