Discussions By Condition: I cannot get a diagnosis.

Mental or Physical?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Malome
  • July 23, 2011
  • 01:36 AM

So I have been struggling for quite some years. I am 23 I have a current set in stone diagnosis of Narcolepsy w/cataplexy, PCOS and PTSD.

When I was fourteen I got diagnosed with PCOS, based on the fact that I was overweight and missed periods. I was given a 24 hour cortisol test at the time to rule out cushings syndrome. It came back negative.

When I was seventeen I started getting really sick. I went from great grades to barely graduating. I slept through every class, couldn't concentrate. I was diagnosed with ADD and then later major depression. In highschool I thinned out and graduated 110 lbs.

I went off to college and continued to get more sick. Couldn't stay awake, Couldn't function. Was severely depressed. I didn't finish my second semester and spent some time in a psychiatric ward instead.

Now it's 2011, I am almost 24 years old. I have been in nearly 20 psychiatric wards and nobody really has any good answers for me. Within the last year I started getting massive headaches, can't pull myself off the couch, can't sleep at night, can't sleep more then three hours at a time. I am completely disabled. I get confused at times, can't think clearly. I have been on over 40 psychiatric drugs since I was 17 and none of them have touched anything. They consider me medication resistant.

Recently I've started to realize I am hallucinating. Auditory. Beeps, buzzes, door bell rings, radio's playing, music.

I get constant hot flahses. Haven't got my period in eight months. Blurry vision. Unknown GI issues. Gallbladder surgery. Shot up to 230 lbs like wild fire, but won't go any further. I am constantly craving food. Have malabsorption problems. Get confused easily. Have memory issues and serious concentration problems. I haven't watched TV in two years, because I cannot stay there. I have constant anxiety and depression.

Two years ago I started having sudden cataplexy attacks. 18 months ago I was diagnosed with narcolepsy/cataplexy. Again, no medications help me. The stimulants aggravate my mental health issues and Xyrem made me psychotic.

I got in with an endocrinologist, hoping she'd match up the missing pieces. She figured out I had vitamin D issues, low enough to have the adult form of rickets, which was next to impossible considering I constantly crave milk and it was probably because I have always had issues absorbing things. I also have chronic low magnesium levels and phosphorous issues. She also tested my androgen levels. They were of course (due to the PCOS) slightly high. Now they are down to normal, but still no period. The other things she tested were TSH.

I was tested for diabetes. Came back negative. I had an EEG, came back negative for seizures. I had EKGs and ECGs at one point to find out why I was passing and I had small issues which they said was usually in tune with a heart murmur and was nothing to worry about. I do have a past history of a severe eating disorder.

My immediate family is healthy. Normal weight, active, etc. Both my parents have had bypasses at young ages. I've had an extensive history of cancer. Lung, stomach, brain.

My doctors now want to diagnose me as schizoaffective or pure schizophrenia due to the psychosis issues. I have declined a lot in the recent year, but I still feel like there is something to fight for. I have moments of clarity and moments where things just aren't clear.

What I can't figure out is if this is a typical mental health diagnosis or if something physical is causing it?

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.