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Fiancee w/degenerative disk disease, spondyloptosis

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December 4th, 2007
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
replied December 5th, 2007
Active User, very eHealthy
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
replied December 5th, 2007
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
replied December 5th, 2007
Active User, very eHealthy
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
replied December 6th, 2007
Active User, very eHealthy
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.

From what I read on the web site

www.wrongdiagnosis.com/sym/muscle_atrophy. htm

it is recommended that the patient seek the advice of a neurologist.

Hope this helps some.

RichT
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rollar64
replied December 6th, 2007
Active User, very eHealthy
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
replied December 7th, 2007
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
replied December 8th, 2007
Active User, very eHealthy
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
replied December 8th, 2007
Active User, very eHealthy
yes good work ttirips i hope you and your Fiancee can work through things and get a good out come


all the best
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