Not sure what's causing my symptoms :( (long, detailed.)
 

Hello. This is my first post.

My name is Jessica. I'm 19 years old. I've been experiencing a number of symptoms for a few years now and I'm not sure why. I've seen doctor's and gotten tests and been on and off medication. I've yet to have gotten any conclusive diagnosis or any results from the medication.

-I was diagnosed with Arnold Chiari Malformation Type 1 when I was 8. It was mostly asymptomatic, but it progressed to the point needed a decompression. It was done December of 2004.

-I've had problems breathing. I have asthma and a history of pneumonia and bronchitis.

-Starting in 2005 and on and off since then, I've had severe episodes of constipation. I can't go for up to 5-7 days at a time. I loose my appetite. I get bloated, nauseas, fatigued. I even vomit. I've had a colonoscopy in 2007, it was fine. In October 2009, I had an EGD, it showed undigested food in my stomach that was about 20 hours old. Otherwise, it was fine, no sign of disease or inflammation. I had a barium swallow with small bowel follow through done about 3 weeks ago that I haven't heard back from yet.t I had trouble keeping it down, it made me vomit. It took 14 hours to digest.

-I get random rashes on my face and chest. It looks very flushed and red, for no reason

-I have stiff muscles, especially in my neck. It is very, very, stiff about 90% of the time.

-I have severe headaches, mostly in the back and sides of my head. Sometimes they're on the top of my head. They are throbbing. I can feel the blood flowing through my head. They are very intense and constant. They've been going on for weeks now. They get worse when I have a bowel movement and when I change position when I'm lying down.

-I have facial spams. My lips hurt and twitch. My eyelids spasm.

-I been dizzy, and been having trouble walking, and mild trouble with coodination. I feel off balance.

-My speech is off.

-I had a violent episode off "shaking." I was tremoring all over for about 2-3 weeks. I still occasionally have spasms.

I'm lost weight and I'm very thin. (5'2 and 90 lbs. was 99 lbs a year ago.)

-My MRI, CT scan, and blood tests have all been clear. (Blood tests have been for lupus, thyroid, blood panel, etc. I don't remember all, just know for sure it's not lupus or a thyroid problem.)

I'm currently seeing a gastrointrologist and a neurologist. They are both very concerned, and I have appointments with both in January. My neurologist says that most off my symptoms seems to be related to my cerebellum but since my MRI was fine then it may be something systematic.

I'm currently taking Topamax, Flexeril, Miralax, Zyrtec, and Omeprazole, and I was on Ketorolac for pain but recently ran out.

I'm not sure how much sense any of this made but any help would be appreciated.

The digestion problems and undigested food makes me wonder if your enzymes for digestion are missing or to low.
Has that been looked into?

Have you thought about an expert naturopath or homeopathic dr?
They will look into this type of problem with out throwing more meds into the mix.

I'm not sure if this is what you mean, but I have been tasted for lactose intolerance, and celiac disease. Both came back negative. In October I went to the ER because I had a really, really bad headache and was shaking violently. I was found out to be dehydrated. I had blood taked to check for my electrolytes, but it turns out that they were suprisingly fine. It is still a possibility, I guess. I think my doctors my doctors still might want to run more blood tests for nutritional defiencies.

My mom likes to go to the health foods store and sometimes she buys me different tablets for digestion but they never seem to help. I will try and see if I can find a dr who specializes in that kind of stuff. Thanks.

as far as celiac testing, it has a fairly high false negative rate, and wont show gluten sensitivity....the "food left in stomache" may speak to a lack of stomache acid, rather than too much, which the omeprazole would not be helping- also contributing to a Vit B12 def. i wonder if you might try a DAN! doctor.....and going gluten free for a couple of months will not hurt you. good luck

I didn't know that celiac testing had a high false negative. That's interesting. I've actually been wondering the same thing about the lack of stomach acid. The omeprazole "kind of" helps because I get heartburn, but not as much as I would like it to.

I recently changed primary care doctors, I went from seeing a pediatrician, to seeing the same family practice doctor my mom goes to. My mother was getting fed up with my pediatrician, I kept coming in with a bad stomach ache and none of her advice was helping. I went in for a check up with my new doctor. She did a thorough examination and requested copies of my files. She wanted to check if I've ever been tested for anemia. I know that B12 def. can cause anemia problems, so I think you might be on to something. Thanks.

What's a DAN doctor?

A DAN! doc is "defeat autism now!" they apparently are more into the wholistic medicine thing....nutrition and such, and perhaps are more curious? lol ..good luck

I need to say. when doctors don't find answers it really is time to check the foods your eating and remember what is normal for some is not for others; check the chemicals in your environment, water, food, clothing and air. just thinking about what you came in contact with recently (minutes to days previous) may trigger some ideas. I have found many answers that Drs. couldn't, for me it helped greatly.