Discussions By Condition: I cannot get a diagnosis.

wide range of symptoms, please read

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: casiejoy
  • September 23, 2007
  • 11:38 PM

hi my name is casie, i'm 17 years old && about four years ago i started getting some strange symptoms. My mother has tried her hardest to get me some help but no doctor seems to be able to tell us what is wrong. i will list the symptoms in the order they occured && hopefully somone will be able to help. thank you && god bless.

growing up i complained of leg cramps all the time. not the usual growing pains, i literally carried a heating pad with me wherever i went from the time i was about 4-11. if i could not get to a heating pad, nothing would help, i would be in excruciating pain.

at age 13 i develpoed a small bump (under the skin) in the lower left quadrant of my abdomen. at first it caused no pain, except when i ran. being an active cheerleader and dancer, i eventually had to quit due to the fact that i could not move that way anymore without being in a lot of pain. also, i realized about 5 months after finding the mass, that when i was stressed pain would radiate from my lower abdomen, down my leg and up my back. the pain became so bad i began sleeping much more than normal and also began missing many days of school. i was started on anti-depressants and tried changing my diet but nothing helped.

around this time is when we first started to visit doctors. endometriosis and celiac disease run in my family on the maternal side. i was tested for celiac && then had an upper endoscopy. the results were negative. in april of 2005 at 15 years old i underwent exploratory surgery. the gynocologist found a small amount of endometriosis but not enough to be causing the pain.

i should also note that i have been seeing a chiropractor since i was around 8 years old due to the fact that my muscles do not hold and my neck and back are always out of place, causing a lot of pain. i now see him about every 2 weeks and cannot go much longer than that without getting a very bad headache.

about a year and a half ago i started noticing that my knee's hurt a lot. i was given and x-ray and the doctor noticed that i had way to little cartilage for a person my age. i was then given an MRI which showed nothing was wrong.... i attribute the different diagnosis' to the fact that during the x-ray i was standing and during the MRI there was no pressure on the joints. along with knee pain, i started having pain in my other joints, including my hips, ankles, shoulders and lately my elbows.

my muscles are always sore and i was told by one person that my lymph nodes are very inflamed.

within the last year i have had two new symptoms both of which scare me alot. first came the memory loss. it started with just forgetting simple things, like leaving books at home which i knew i must take to school every day. it then turned to problems reading. i will read a page but it is as if i am just looking, not taking in any information. also, i would be talking and completely forget what i am talking about. this evetually lead to my dropping out of high school because i could no longer read or understand what we were supposed to be learning.

my last symptom occurs when i do not go pee. for instance if i am driving or sleeping, my back starts to hurt really bad, but when i go, everything returns to normal. i have also had 2 urinary tract infections in the past.

sorry it was so long, but any kind of help will be greatly appreciated!!!

Reply Flag this Discussion

4 Replies:

  • Check out lymenet.org (a very helpful group)Also ILADS.org look for the symtom list. It is the Internation Lyme and Associated Diseases Society.Testing is very unreliable and regular doctors aren't up on this. You would need a lyme specialist. That's where the first link could help. You can also use the search feature there and plug in your symptoms or look under the newbie links. Much reading but start with the symptom list.A commonality between lyme patients is that most have been to multiple doctors, often misdiagnosed, or no diagnosis at all to explain the strange and wide range of symptoms.Good Luck
    Anonymous 42789 Replies
    • September 24, 2007
    • 07:28 PM
    • 0
    Flag this Response
  • You may have an autoimmune disease. Reiters syndrome?Behcet's Disease? PS-- Your description impressed me. After reading the frist few paragraphs, which were very intelligently written, I was surprised that you had dropped out of school!
    aquila 1263 Replies
    • September 26, 2007
    • 05:51 PM
    • 0
    Flag this Response
  • There is NO such thing as a small amount of endometriosis - you have it or you don't have it, and it continues to grow unless it is "excised" by an endometriosis specialist. Traditional endo treatment is almost always temporary. It would definitely explain the lump in your abdomen, the pain you are feeling, and the frequent urination (endo often will grow on your bladder wall). Also, untreated celiac disease (that is, continuing to eat wheat and gluten products) causes JOINT pain. The hormonal imbalance that is leading to the endometriosis would also lead to your poor memory and inability to concentrate. Endometriosis and celiac disease travel together.. Please check out the endometriosis board on yahoo groups - they can send you in the right direction as far as the expert doctors in your area - in the meantime,A Better Approach to Endometriosis - the website of one of those doctors...
    Anonymous 42789 Replies
    • September 26, 2007
    • 07:11 PM
    • 0
    Flag this Response
  • There is NO such thing as a small amount of endometriosis - you have it or you don't have it, and it continues to grow unless it is "excised" by an endometriosis specialist. Traditional endo treatment is almost always temporary. It would definitely explain the lump in your abdomen, the pain you are feeling, and the frequent urination (endo often will grow on your bladder wall). Also, untreated celiac disease (that is, continuing to eat wheat and gluten products) causes JOINT pain. The hormonal imbalance that is leading to the endometriosis would also lead to your poor memory and inability to concentrate. Endometriosis and celiac disease travel together.. Please check out the endometriosis board on yahoo groups - they can send you in the right direction as far as the expert doctors in your area - in the meantime,A Better Approach to Endometriosis - the website of one of those doctors... Yes, you are right on, Fauve! Some women have severe endo symptoms and some have no symptoms and it doesn't relate to how severe the lesions are. Definitely find a endo literate doc to help you with this! Consider acupuncture as it is very helpful for endo. Also, Lyme may be a possibility and Bowen and Igenex labs are the only reliable tests for this. Please get tested to rule this out. Consider trying NAET (Nambudripad Allergy Elimination Techniques) as undiagnosed allergies can contribute to chronic illnesses. NAET can successfully treat celiac and other allergy based illnesses. www.naet.com for more info. Best wishesDOM
    acuann 3080 Replies
    • September 26, 2007
    • 07:27 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.