Waiting on diagnosis...

[sunni_d89]

Here's a tough one for you. I'm a 26-year-old female. My problems started with abdominal pain, nausea, and severe wrist pain when I was about 8 years old. The doctor diagnosed me as lactose intolerant. Over the years, the nausea and abdominal pain got worse and more frequent. I also developed pain similar to the wrist pain in nearly every other part of my body. At this point, the pain is now in all my joints, muscles, and bones at alternating times. I have light-headedness probably two or three times a week. I've also been an insomniac almost since all this started. I have "heart hiccups" occasionally and chest pain on both sides (though more often on the left), and both are becoming more severe and more frequent (my last one lasted about 5 days). I get frequent headaches that are getting on the verge of migraines. And I have extreme sensitivity to cold. Most annoying is the constant and unbearable fatigue and weakness.

So I've been to about  a million doctors and have been diagnosed and un-diagnosed with everything under the sun. Typically, the tests come back negative for everything. Nonetheless, in addition to being diagnosed as lactose intolerant (which I'm actually not), I've also been told I have Celiac disease (and then told again I didn't have it), Hashimoto's Disease (which two other doctors said absolutely nothing was wrong with my thyroid), Juvenile Arthritis (which also has been proven false), and of course, Chronic Fatigue Syndrome and Fibromyalgia. The most recent test found an unusually high level of ANAs with a speckled and rimmed pattern. The doctor said it looked just like Lupus, but she ran a Lupus panel as well, which came back negative.

Essentially, no one has any idea what's wrong with me. My doctor is urging me to see a rheumatologist, but I can't handle any more tests. Or any more false diagnoses. Is there anyone who has any suggestions at all? Does this ring a bell for anybody else?

Thanks for the help!

[NauseatedMommy]

Well, I am kind of in the same boat!!!  I just turned 25 2 weeks ago, and going thru test after test after test after test, and just as many diagosis'!!!!  I understand that you dont want to have more tests ran, but actually going to a rheumatologist is your best bet of figuring it out in my opinion!!!  Has anyone ever checked your Vitamin D levels???????????????  I know that sounds crazy .... but your Vitamin D levels can affect EVERY SINGLE THING YOU LISTED ... I know, because my levels are extremely low, and I stay on Vitamin D treatment 8 week trials!!!!  When I had my bloodwork ran I also had high levels on ANAs, and told it was possibly Lupus; then they ran the Lupus panel, and it also came back negative.  After all that they ran another test, and came up with Schogren's Syndrome.  Please keep in touch!!!!

[NauseatedMommy]

P.S.  Oh yeah ... and I forgot to mention, I get the EXCRUCIATING wrist pain, that has now moved into the top of my left foot!!!!  The fatigue and tiredness, and muscle achiness is terrible!!!  Been there and suffered that too!!!  I know your miserable, but if you say no more test . . . . then you may never know whats wrong or find out something that may help!!!  Have you been on any medicines???  Have they tried anything to help any of your symptoms out????

Im serious though .... you REALLY need to think about the Vitamin D thing!!!!  When he fixes my Vitamin D level (it only stays normal for about a week after a 8 week trial), I can tell a BIG BIG BIG differene in the fatigue and achiness, and just all around!!!!  I sincerly hope something I said helped, even if just a lil!!!  :-)