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Myasthenia Gravis Cyber
Surgery
Frequently asked questions and answers
courtesy of
Todd Levine, M.D.
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Disclaimer |
The information on
this page is intended to provide the reader with
general information to be used solely for
educational purposes. As such, it does not address
individual patient needs, and should not be used as
a basis for decision making concerning diagnosis,
care, or treatment of any condition. Instead, such
decisions should be based upon the advice of a
physician or health care professional who is
directly familiar with the patient.
The information contained in this page reflects the
views of the authors, but not necessarily those of
Seniors Network and we make no warranty concerning
the information contained within. They assume no
responsibility for any damage or liability resulting
from the use of such information. |
QUESTIONS
1. Do we know what causes our
bodies to produce antibodies to attack our
muscles?
2. How do our
muscles recover their strength with no medication if we rest?
3. Why do my symptoms
come and go?
4. Can Certain
Foods trigger MG exacerbation i.e.: salty foods?
5.
Why does daylight or bright light cause my eyelids to "shut
down"?
6. Why does excess
mestinon exacerbate my symptoms and make my muscles weaker than
they had been without it.
7. I'm now on 3
grams Cellcept and 125 mg. cyclosporine/day; they seem to
control my MG symptoms but my overall strength seems to have
diminished over what it had been when I was first diagnosed. Is
this MG related or just a coincidence?
8. Sometimes my
tongue feels fat and swollen as well as my throat and everything
seems to be closing up and trouble breathing. Am I really
swelling or does it only feel that way? If it is really
swelling, then why wouldn't physicians be able to prescribe
drugs such as anti allergy drugs to
fight this problem?
9. Are
there any known links or research regarding any kind of
connection between MG and Fibromyalgia Syndrome?
10. What do you think
about sero-negative MG? Is this widely accepted or not in the
neuro community? What would finally get a neuro to give an MG
diagnosis, with tests being negative but with MG signs/symptoms?
11. When I eat a meal, I notice
that my sinuses seem to clog up and I have to blow my nose
constantly. I just assumed that it was me, until I read of
another Myasthenic who has the same problem. Is this a common
problem?
12
Can I become pregnant if I have MG?
13
If I am pregnant, should I continue
using Imuran and Mestinon?
14 Will
my baby be born with MG just because I have it?
15
Is MG hereditary?
16
What are the statistics on
thymectomy outcomes; ie: full remission, partial medicated
remission, no response etc.?
17
I do not want to try any medication to treat my MG until I try
alternative methods of treatment. Can you recommend any forms
of treatment that MG patients can try to control MG on their own
without using medication?
18
Do I have to continue taking cellcept and cyclosporine
?forever?, or will I someday be able to taper off them, without
the MG symptoms returning?
19
Mestinon is a non specific, that is, it acts upon healthy muscle
receptors as well as antibody damaged receptors. What, if any
are the long term effects of mestinon on normal healthy
receptors
20
What are the best methods for myasthenics to maintain their
muscle tone? Repeated exercise weakens our muscles as opposed to
normal non myasthenic muscles, which strengthen with exercise.
Is there a solution to this ?catch 22??
21
If a myasthenic has a thymoma does age play a part in whether to
have it removed or not? If you don't have it removed for age
reasons how do you know if it is cancerous or not?
ANSWERS
1)
There is no known cause for MG. There is a link to other
autoimmune diseases such as thyroid disease or diabetes. There
may also be a link to the thymus gland, but as of yet there is
no answer to why some people make antibodies to the
acetylcholine receptor.
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2)
MG is caused when
the number of receptors for acetylcholine on the muscle
falls below a certain level. We need acetylcholine to interact
with the receptors to make our muscles move. These receptors are
destroyed by the antibodies which are produced in MG. In some
people with MG there are enough receptors to make your muscles
move once or twice but then the muscles fatigue because the
receptors have not gotten ready to be stimulated again. With
rest the acetylcholine receptors can prepare themselves to be
re-stimulated so symptoms seem better but then there is fatigue
again.
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3)
Symptoms come and
go for the reasons mentioned above
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4)
There are no
foods which we know of that can trigger MG exacerbation.
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5)
There
should not be any change in symptoms with daylight, although
some people notice a change with temperature. There is another
disease cause blepharospasm which causes involuntary forced eye
closure and this is triggered by sunlight. If the eyelids seem
to be forced down as opposed to
being weak, then you should consider the possibility of
blepharospasm.
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6)Excess
mestinon can make MG worse because it will cause over
stimulation of the acetylcholine receptors which can lead to
muscle weakness. If you believe that excess mestinon is causing
your muscle weakness you should discuss this with your doctor
because this can be serious. Usually if you
have too much mestinon you will also be sweaty, nauseated, and
have diarrhoea.
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7)The
main symptom of MG is muscle weakness, so if you are weak I
would be concerned that your MG symptoms are not completely
controlled. You should discuss this with your doctor.
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8)In
MG the tongue and throat can feel thick or swollen because
they do not move well. This can be a serious medical problem and
so I would say you need to discuss this with your doctor.
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9)
There are no known links between Fibromyalgia and MG. MG has
a known cause and treatment. Fibromyalgia has not yet been shown
to have a known cause or a specific pathology or treatment. Some
people that I have seen who have been diagnosed with
fibromyalgia are in fact significantly weak and with the correct
diagnostic tools are shown to have MG. So I would say if there
is a lot of weakness then one should look aggressively for MG.
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10)Sero-negative
MG is widely accepted. It is believed approximately 10% of
patients with MG are seronegative. However new antibodies are
being discovered so this number will decline over the next few
years. If you believe someone has MG but has normal blood tests
then you need to do a good
EMG/NCS including repetitive nerve stimulation and possibly
single fiber EMG. If all of these are negative than I don't
believe you can make a diagnosis of MG.
to to top
11)
In MG if
your swallowing muscles are weak then eating or drinking can
cause the food to come out of the nose. This is also a serious
problem because it can be a sign that your breathing muscles are
weak. You should discuss this with your doctor.
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12
Pregnancy is complicated by MG but not impossible. There can be
problems with the medications people take for MG in terms of
fetal development. MG can also be made worse by pregnancy. It is
still possible to have a healthy baby with MG but it is best to
discuss this with your neurologist BEFORE you get pregnant.
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13 Mestinon is probably safe in pregnancy. However; other than
tylenol and codeine the FDA does not declare any medicine SAFE
in pregnancy. Imuran can suppress the immune system and we do
not know how it affects the fetus. These issues should be
discussed with your doctor.
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14 Many babies that are born to
mothers with MG have a 4-6 week period right after they are born
where the mothers acetylcholine receptor antibodies get into the
baby and cause weakness. This can be severe and end up with the
baby going on a breathing machine. After the 4-6 weeks the
antibodies from the mother are cleared out of the babies system
and the baby is normal. It is important for the OB doctors and
pediatrician to know the mother has MG so they can be prepared
at the time of delivery.
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15 There are a few rare forms of
MG which are hereditary. These are called congenital myasthenia.
In autoimmune myasthenia where people have antibodies, it is not
genetic.
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16 There are no good data on
thymectomy. The largest trial was done out of Duke University in
the 1970's and suggested that after thymectomy MG is easier to
control. But there are no data on number of remissions, cures
etc. In general in young healthy people with generalized
myasthenia we believe the benefits are greater than the risks.
There is a large trial getting started to ask this question.
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17 There are no alternative
treatments which have ever been shown to be effective. Treated,
all patients with MG should lead an normal life and have a
normal life span. Untreated, MG can be fatal.
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18
Some patients can be "cured" **, but most patients require
treatment of some form for their lifetime.
** there is no cure for MG, what is meant by this is a complete
or long lasting remission!
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19 We do not know of any long
term of taking mestinon healthy muscle.
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20 Knowing what type of exercise
to suggest to people with MG is difficult and there are several
studies investigating this question. In general I suggest that
people do what is comfortable but not to the point of
exhaustion.
21 Since
the benefits of thymectomy takes years to see, doing it in
people over 80 makes little sense but if someone is expected to
live more than 10 years it is reasonable to do.If the thymus
appears enlarged on CT or MRI (thymoma) it should always come
out because cancers are possible.
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© Brian Houston 2002-2010
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