Discussions By Condition: I cannot get a diagnosis.

Please Help, I am about to give up

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: BlueDancer
  • January 24, 2009
  • 05:36 AM

Hi all. I am a 22 year old college student. I am a dancer and a very happy person- but I barely have the energy to get through the day and my eyes bother me 24/7, especially when I am overheated. About a year ago I developed a visual defect in my left eye along with a pain/pressure behind my eyes. I saw an opthalmalogist who said I had optic neuritis and referred me to a neuro-opthamoligist. My symptoms at the time were: extreme fatigue, poor memory, visual issues, frequent headaches, a torso rash, as well as a strange cold wet feeling on my arm. If I touched my arm it felt like an ice cube was melting there. By the time I saw the neuro-opthamalogist, I had visual problems in both eyes. I was told I had a swollen and pale optic disk, and that my pupil (left) had a delayed response. I was hospitalized right away and told that the doctors wanted to check for M.S and other possible causes. After over a week in the hospital, a spinal tap, countless MRI's, blood tests and neurological tests, I was told that they didn't know what I had- but they told me my vision problem was permanent and I just needed to learn to live with it.

I saw countless doctors who tested me for Celiacs (runs in the family) M.S, Devics disease, vitamin deficiencies, anemia, and numerous other diseases. At the follow-ups I always got the same response- which was a pat on the back and a dismissal. Now, all this time later, my eyes are once again causing pain. The visual defect never went away and I have a huge gray cloud in my eyes. Thats annoying- but I understand there is nothing I can do about it. But the constant pain/pressure behind my eyes is driving me mad. My eyes sting and feel strange. I worry that I am having another episode of O.N, but there is nothing I can do and no one to help me. I am also very tired all the time, and I feel like I am never getting enough air. I have headaches often. My neck gets swollen under my jaw often and I still have this bizarre rash on my torso. I have changed detergents and soap often in case its an allergy, but it never lets up. I eat VERY healthily (all organic, no bad additives) and even use all organic bath products. I just don't know whats wrong.

I don't know what all of these mean, but this is what was in my records:

-My M.R.I showed 'early disk desiccation' and a small hemangioma on my spine. I was told this is not an issue.
-I had a 'diffusly low marrow signal' -thats all thats said about that.
-Multiple bilateral level 2 lymph nodes, with the largest right juglodigastric measuring up to 1.3 cm in short axis.

My blood tests show:
-high phosphorus, high chloride
-Trace protein in urine.
-Low: RBC count, hemoglobin, hematocrit. Low pyruvate.
-Abnormal: RBCS, NEUTS, and 'Other cells of unknown origin'

So, here I am. I am weak, out of breath, with a headache, feeling like I am going blind. My memory is just disgraceful. I do yoga and meditate to keep my stress levels low, but that doesn't seem to help my symptoms. Every doctor I have seen has looked at my eyes and my abnormal tests, and then just told me to get used to it. I am only 22. This may not sound like a big deal to many, but its severely effecting my life and my career. I feel awful. Please, please, please help me!!!

P.S: I don't take any medications at all and I am a healthy weight.

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