Joined: 21 Jan 2005 Posts: 2 Location: detroit,michigan
Strange Symptoms Posted: 01-21-05 11:16am
About two years ago, I started with a
voice tightness. At that time I was
hypothyroid. Then came a real bad back
and then a "shaky" feeling like a tremor.
Then came the muscle twitching. I would
see my muscles roll in my stomach or in my
face. I would get abnormal movements in
my shoulders, fingers, feet, etc. I
would also get spasms in my throat and
esophagus. I have yet to find a doctor
to give me an answer. I went to mayo
clinic and they told me spasmodic
dysphonia and anxiety. I have been on
other websites and a few people have said
that mayo had told them anxiety when they
had a diagnosis of als. I believe I have
bulbar als or some form of mitochondrial
myopathy. I believe something more is
going on than anxiety. I used to be able
to eat any kind of food. Now I cannot
eat any kind of food with msg. I read
that people who have neuromuscular
diseases are affected with msg. Also
cannot tolerate gluten food any more.
Don't know if this has something to do
with the glutuate transmitters and
excitocity in the brain. I have done so
much research but cannot get a doctor to
listen to me. They all don't care. I'm
so frustrated. :( :(
|
rIcHrD
New User, Becoming EHEALTHy
Joined: 16 Jan 2005 Posts: 19
Posted: 01-28-05 09:46am
Go to your doctors and explain all those
symptoms (if they're still there). Then
say what your concerns are:
als/mitochondrial disease. Tell them
you'd be relieved if they performed tests
to find out what was wrong, or maybe at
least just to exclude the possibilities
that worry you.
|
sandyshuby
New User, Becoming EHEALTHy
Joined: 21 Jan 2005 Posts: 2 Location: detroit,michigan
:cry: i've been to so many doctors and
neurologists, it's not funny and yes, i've
explained all of that to them. So what
next?
|
rIcHrD
New User, Becoming EHEALTHy
Joined: 16 Jan 2005 Posts: 19
Posted: 01-28-05 19:43pm
I can't believe they still haven't done
anything.
A competent doctor would have you checked
out thoroughly: mri, eeg, emg, blood test
for immune responses and general checkup
(glucose levels, thyroid hormone,
cholesterol), basic neurological
examination, etc. The idea will be to
have all your symptoms looked at,
especially the ones that couldn't possibly
be psychogenic (e.G. Gluten allergy).
A less than competent doctor would send
you to a psychiatric hospital and tell you
it's all in your head, without performing
extensive tests first to verify the lack
of neuropathy, myopathy or immunopathy
(i'm not inferring you're psychiatrically
ill, just the possible consequences of
ignorance or prejudice on the part of a
doctor).
An incompetent doctor would do nothing.
If you have an incompetent doctor, change
him/her. Tell your doctor you would like
something done - that you are not
satisfied with nothing being done.
Remember it's your life and you have to
take charge when noone else seems to be
doing so for you (your doctor perhaps),
because if the worst happens, it will be
you that suffers. Give them hell if you
have to and get yourself examined and
given a reasonable diagnosis.
Understanding the problem is fundamental
to coping.
|
Hypochondriac1028
Experienced User , Rather EHEALTHy
Joined: 10 Mar 2005 Posts: 313 Location: Ohio
Suks Posted: 03-23-05 13:39pm
Id kill myself if I had it
|
btavern6
New User, Becoming EHEALTHy
Joined: 22 Jun 2006 Posts: 1 Location: idaho
Re: Strange Symptoms Posted: 06-26-06 21:33pm
Hi my name is barb I went to the mayo
cllinic and was told that I have als they
basted it on my voice.They say that there
are the best in the u.S. My a--it has
been 7 months and my voice is getting
better. When I was told I have als is
was told to go home and die. Find a
doctor that will listen to you if there is
one out there. Good luck
sandyshuby
wrote:
about two years ago, I
started with a voice tightness. At that
time I was hypothyroid. Then came a
real bad back and then a "shaky" feeling
like a tremor. Then came the muscle
twitching. I would see my muscles roll
in my stomach or in my face. I would
get abnormal movements in my shoulders,
fingers, feet, etc. I would also get
spasms in my throat and esophagus. I
have yet to find a doctor to give me an
answer. I went to mayo clinic and they
told me spasmodic dysphonia and anxiety.
I have been on other websites and a few
people have said that mayo had told them
anxiety when they had a diagnosis of als.
I believe I have bulbar als or some form
of mitochondrial myopathy. I believe
something more is going on than anxiety.
I used to be able to eat any kind of
food. Now I cannot eat any kind of food
with msg. I read that people who have
neuromuscular diseases are affected with
msg. Also cannot tolerate gluten food
any more. Don't know if this has
something to do with the glutuate
transmitters and excitocity in the brain.
I have done so much research but cannot
get a doctor to listen to me. They all
don't care. I'm so frustrated. :(
:(
|
dinowk
New User, Becoming EHEALTHy
Joined: 21 Oct 2005 Posts: 14 Location: NYC
Thanks: 3
Thanked:0
Listen to the Doctors Posted: 10-28-07 12:58pm
Sandy,
from what your description, you do not
have ALS. If you have visited a lot of
doctors and have done a lot tests, trust
the doctors and test results. Have you
seen movement disorder specilist?
In some degree, you do have anxiety or
panic disorder.
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