Fiancee w/degenerative disk disease, spondyloptosis Posted: 12-04-07 10:37am
my fiancee has degenerative disk disease.
4 yrs ago we were in an accident (auto)
which severely aggravated this to where he
now has spondyloptosis (stage 5
spondylolisthesis). Around that time he
became also very stiff and found out he
also has Ankylosing Spondylitis. He needs
spinal fusion very badly as this has been
going on for 3-4 yrs... He has a lot of
stetching and atrophy in the backs of his
thigh areas. Which I know is common in
spondyloptosis. He is in constant pain. He
has also lost a lot of weight. He's never
been a large guy, he was about 5'8" and
130 lbs when we met 6 yrs ago, now he is
weighing less and less. On a good day he
weighs 107lbs. Which is very dangerous I
think. He is 33 yrs old. He has been
tested for HIV, TB, Hepatitis, which are
all negative. He is not a drug user.
Except pain medication Lortab prescribed
for his pain. The doctor keeps telling him
"Eat more, you aren't eating enough." But
I know he eats because I see him eating at
least 3 meals a day. He tells the dr this
and the doctor doesn't seem to believe
him. He desperately needs surgery and he
has to gain weight before they will do it
but he has really been trying and nothing
works. He eats and nothing happens.
sometimes he'll gain a couple lbs but in a
day or two his weight goes down again. He
is prescribed testosterone because his was
a little low and they thought that might
be why he is skinny but he has been on
that for months and hasn't gotton bigger.
He has really increased his protien
intake, on his doctors's recommendation,
and that hasn't worked. We've been to
numerous doctors and nobody knows why he
is losing weight. Could stress from having
the other 2 conditions for so long be
causing this? He looks very ill. I am
extremely worried about him.....
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rollar64
Experienced User , Rather EHEALTHy
Joined: 21 Nov 2006 Posts: 128 Location: melbourne
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Posted: 12-05-07 03:21am
Hello ttirips can you tell me if he is
physically active, i have back and leg
problems and i cannot walk properly, and
it takes a huge amount of energy to
complete my daily activities this is a
well known phenomena for people who have a
dysfunctional gait, all though i am not
saying that this is his problem when it
comes to his weight . No matter how much i
eat i am quite thin and, gaunt due to the
fact that i am expending a large amount of
energy, the worse my back is the skinnier
i get.
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ttirips1
New User, Becoming EHEALTHy
Joined: 03 Dec 2007 Posts: 7
Posted: 12-05-07 11:30am
Well he is not very active but he does
walk, very slowly and sort of crouched.
His gait is very abnormal. The muscles in
the backs of his legs, knees to buttocks,
have atrophied from not being able to
properly use them. He is not entirely
inactive though. He still lifts light
things and tries to contiinue his normal
activities but he is somewhat limited. He
can't lift heavy things, run, or stand or
walk for more than an hour and a half,
etc.
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RichT
Active User, Really EHEALTHy
Joined: 22 Jul 2007 Posts: 823
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Posted: 12-05-07 12:12pm
Hello Ttrips,
My thoughts and prayers are with your
Fiancee and with you.
What concerns me the most in a way is that
your fellow can't gain any weight. All
sorts of factors can enter in as to why he
is unable to gain weight. And the issue
with his muscles is most concerning. I'm
trying to think of a specialist that would
deal with such issues. Let me give it
some thought. I just get this very uneasy
feeling that there is something else that
is causing the weight loss, etc.
Truly, my thoughts and prayers are with
both of you.
RichT
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RichT
Active User, Really EHEALTHy
Joined: 22 Jul 2007 Posts: 823
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Posted: 12-06-07 00:03am
Hello Ttrips,
May I suggest that you go to Google and
type in "weight loss muscle atrophy".
Quite a numger of web sites come up. You
may wish to take a look at Dr. Koop -
Muscle atrophy for some good information.
it is recommended that the patient seek
the advice of a neurologist.
Hope this helps some.
RichT
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rollar64
Experienced User , Rather EHEALTHy
Joined: 21 Nov 2006 Posts: 128 Location: melbourne
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Posted: 12-06-07 04:47am
Hello again ttirips, Ankylosing
Spondylitis cause weight loss especially
in the early stages, i would think that
the doctors would realize this ,and have
factored this in. But you might want to
mention this to them. You are right to be
worried he has two pretty serious
conditions i did not realize how bad
spondyloptosis was at first ,there are so
many conditions that start with spondy i
cant keep track of them all. It seems
these two conditions often can cause
weight loss and muscle atrophy, i hope the
doctors get things sorted out so your
Fiancee can get the operation that he
badly needs.
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ttirips1
New User, Becoming EHEALTHy
Joined: 03 Dec 2007 Posts: 7
Posted: 12-07-07 11:32am
Well guys I thank you so much for your
time and answers. I looked around for
malabsorption problems online (because he
is obviously not absorbing nutrients from
his food). Turns out that the same gene
(HLA- human leukyte antigen)responsible
for Ankylosing Spondylitis (which he has)
can also be linked to Celiac Disease
(another autoimmune condition, like AS).
Basically its an allergy to gluten, which
damages the small intestine to where the
person can't absorb nutrients and
therefore becomes malnourished. The
disease can also cause joint aches and
fatigue. This might be his problem. We are
going to try a gluten free diet. If it
works we will mention this to the doctor
and he will be tested for celiac.
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RichT
Active User, Really EHEALTHy
Joined: 22 Jul 2007 Posts: 823
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Posted: 12-08-07 08:46am
Good Morning Ttirips,
You are one amazing young lady. You do
your research well. Your fellow can be
very proud and thankful for all you are
trying to do.
May I suggest that you speak with his
doctor now about your thoughts of putting
your fellow on a gluten free diet to get
the doctor's thoughts before stating the
diet. Most liikely you are correct, but
far better to know that what you plan to
do is the right thing.
One must always be careful not to play
doctor. So get on the telephone and speak
with his doctor.
I wish you both the best.
RichT
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rollar64
Experienced User , Rather EHEALTHy
Joined: 21 Nov 2006 Posts: 128 Location: melbourne
Thanks: 1
Thanked:0
Posted: 12-08-07 09:08am
yes good work ttirips i hope you and your
Fiancee can work through things and get a
good out come
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