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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.
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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 2002-2006
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Myasthenia
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