Discussions By Condition: I cannot get a diagnosis.

Years without diagnosis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: nowordforit
  • October 19, 2010
  • 10:46 PM

My medical drama started when I was in high school.

Starting in my junior year, I started to feel very tired. I also developed Raynauds phenomena. Because I was also having severe headaches (which I've had since childhood), insomnia, as well as severe shoulder pain I was referred by my then pediatrician to see a rheumatologist. This rheumatologist was wonderful in that she truly believed that there was something wrong with me, but she couldn't diagnose it. She was leaning towards scleraderma (because I also have GERD), but never could pin it.

I went on to college, and I did alright. But I was always so tired. I barely had any energy to do anything outside of classes. My grades over the next few semesters began to decline until I received all B's in a semester (the worst I've ever done). I was referred by my PCP to see an endocrinologist, who told me I was depressed and was quite rude, but DID tell me that I had a goiter. So I went to another endo who disagreed and told me I had Hashimoto's thyroidits (I tested pos. for antibodies) as well as hypothyroidism. I was put on synthroid, and within 2 weeks I was feeling marvelous.

However, my dosage was very quickly taken down until it had been decreased to 50 micrograms (from 88). It turned out that my TSH had spiked from the Synthroid and that I could never safely take it again because of such an adverse reaction. I went to see a 3rd endo for a new opinion, and he told me that I didn't have a thyroid problem, but that he DID think I was sick.

So, I'm back to feeling absolutely awful. I'm a senior pre-med, and I'm just not able to keep up anymore. In the past year I've also started having severe sinus pain. I've had 2 CT scans, been taken for allergies, and had a scope run down my nose. My nose is apparently extremely swollen due to absolutely nothing.

A few months ago I went to a new rheumatologist and got tested for everything she could think of. All negative. She told me that it might take 10 years for a diagnosis. I really don't want to wait that long.

So in summary if you didn't read: shoulder pain, severe sinus pain/pressure, fatigue, raynauds, thyroid antibodies (?), & GERD

Thanks for the help :)

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