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tethered spinal chord corrected..A lot wrong. Joint pain.

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First of all let me say that I'm not at a point right now where I would consider any of this life threatening, but it's certainly extremely annoying and has plenty of disadvantages. I've been to a few doctors so far. The family physician wasn't able to help much. I've been to a few types of specialists that seemed like their scope was a bit too narrow. I'm considering going to a rheumatologist because, well frankly, you have to be brilliant to understand the body and immunology as well as they do and i feel like even if nothing autoimmune was present they would be able to point me in the right direction. I'm looking for advice on what to look into, and what, if any of this could be related or linked by an underlying issue.

Disclaimer: I did have a tethered spinal chord as an infant and it was corrected at children's medical center in Dallas by the leading expert in the country at the time (now retired.) I also had childhood asthma. I don't think either are relevant, although it might be worth noting that i was on steroids for the first 6th months of my life for hemangioma. All my baby pictures show me as being quite puffy as a result.

So I guess i'll just do my best to explain what's going on.

About two years ago I started feeling constantly lethargic and noticed i was cold on a regular basis. My thoughts were a bit sluggish and things just seemed generally... Uncomfortable. After blacking out one day in my room and waking up on the floor, I started assessing my lifestyle and body and realized i was really underweight. I was 6'2'' and 120lbs. I realized (and i'd never noticed it before) that i was going entire days without much food other than sunflower seeds or maybe some potato chips or something.

Let me clarify something from the start; I do not have body image issues. Not apart from loathing that i now look like skeletor and look a bit sickly in a mirror. I do not binge or purge. I simply lack an appetite. I do not eat simply because my body doesn't seem to remind me and I tend to forget.

I forget what order things happened and when i saw which doctors, so i'll try to summarize the current status of my body as best i can.


.I'm 6'3'' and i weight 127lbs. I have tried forcing myself to eat a balanced but high calorie diet for 4 months (3.5kcallories for 3 months, 4k for one month.) and i did not gain weight or an appetite. I just felt stuffed the whole time and uncomfortable like after thanksgiving dinner.

.I've been tested for sprue, it came back negative.

.Thyroid levels were also checked in blood-work and were normal.

.I had black blood in the stool a few months ago which caused me to see a gastroenterologist. I got an upper endoscopy done, and there was still food in my stomach despite having been 10 hours sense i'd eaten. There was no ulcer or apparent cause of bleeding but it seems like a fluke given that it hasn't happened sense.

.Although a doctor i know suggest it, the Gastroenterologist said i was not likely to have crohn's disease and i have no pain that would indicate such.

.I have plantar plantar fasciitis in both feet that did not go away after 6 months of physical therapy. The inflamed part is actually right over the arch rather than the heel or the ball of the foot. I decided not to have the operation for this given everything else weird that's going on. I've also had very tight tendons in my legs despite stretching them on a regular basis.

.I have what look like perfectly strait, perfectly horizontal stretch marks on my back that have been there for over a year. They flare up sometimes when i sweat and itch badly. They turn red.

.My joints hurt. A LOT of my joints hurt. Particularly my knees, which i can get to pop extremely (i've startled people) loudly, the joints in my hands, especially my thumbs, and my elbows. But in addition, most of the joints in my fingers, my ankles, my wrists, and toes have ached. Popping them seems to temporarily cause the aching to go away, but it feels like pressure builds back up in the joints over the course of the day until i can get them to pop again. The knees have been bad enough to keep me awake for hours at least a handful of times. I saw a chiropractor, he said it's caused by Hypermobility and that he was able to shift my lower leg around inside the knee. This was not a problem 6 months ago.

.I have mild trichotillomania. I can feel an individual hair out of hundreds singled out. It stands up on end and throbs like pressure is building up. I can pick that individual hair out and remove it. My eyebrows don't look too good but luckily i tend to leave my scalp alone. Oddly, putting drugstore anti-rash cream on it during a flare up seems to stop the sensation on the hairs and i'll leave them alone. Not sure what inspired me to try this.


Again, any insight on what may or may not be related in all of this, or what kind of doctor to see would be extremely helpful. I have a habit of gaining motivation on this and then getting nihilistic when nothing seems to go anywhere. When tests don't seem to go anywhere and doctors shrug their shoulders i'll even second guess if anything is wrong which is... Well, it's kind of a silly thing to second guess. o.o

Thanks a ton,
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replied September 26th, 2012
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A rheumatologist would be a good start. Many of them also have a secondary fellowship in immunology.

A good internist (specialist in Internal Medicine) may be able to put all of the different symptoms into a pattern and figure out what is the underlying etiology.

You are definitely thin for your height. Being underweight is just a detrimental to the body and mind as being overweight. And, just trying to stuff yourself to gain weight is analogous to someone who is obese always trying weird diets. You have to change your eating habits for a lifetime; there are no short cuts or easy "cures".

If you are having problems with depression, due to the stress of not knowing what is going on, you should also look into having that treated. Depression is a medical illness and does not mean that a patient is crazy or weak willed. Again, it is a medical illness, which needs to be treated. It is often amazing how patients will feel so much better physically once their depression is managed. Just a suggestion. You might look into it. And, you do not necessarily have to see a psychiatrist. If you prefer a psychologist, counselor, or a religious mentor (pastor, priest rabbi, mullah, etc), they are often trained to help patients with medical associated depression. It is a well known fact that depression makes pain worse, and, pain makes depression worse. It becomes a vicious cycle.

Good luck. Hope you feel better soon.
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