How do I get diagnosed? 25 y/o male with suspected UCD.
Fri Nov 25, 2011 21:52
My entire life I've had an aversion to food but it seems to have gotten much more severe recently.
As a child, I was underweight but normal. As far back as I can remember I have suffered severe brain fog/fatigue after meals. It has gotten progressively worse over the last six months, since starting prednisone, and I had deteroriated rapidly after eating a low carb high protein diet.
I don't suffer symptoms from protein free meals, I've isolated it down to protein...but it's all protein, so it's not a food allergy. Meals that are 1-15g in protein cause me to sleep for 1-3 hours, meals that are higher in protein have caused me to suffer extreme lethargy, sleepiness, and fatigue causing me to lose all energy and fall asleep for even longer, and recently I've had 3 reactions that have caused me to visit the emergency room.
They weren't able to isolate what was causing the reaction but the last one, I thought I'd die. It was following a meal with roughly 50-70g of protein, I developed extreme confusion, lethargy, difficulty breathing, hoarseness, and I was so out of it that I didn't think I'd survive to the ER. Those reactions aside, my normal reaction to food is that I feel like I've been shot with a tranquilizer dart and the first thing that goes seems to be my brain function; I just get really, really confused and sleepy.
They are trying to get me into Mayo clinic as soon as possible and I've been eating as little protein as possible over the last few weeks, but I'm losing too much weight and can't continue like this. Are there any alternatives to that? Can I get diagnosed in a local hospital?
I really don't feel like waiting... but appointments in the research hospitals can take so long.
Hi Christopher, Unfortunately it's pretty rare to be able to get diagnosed at a "local" or small hospital. Even major university hospitals sometimes do not have the expertise. It would be unusual to... more
See the reactions I have are that I experience extreme sleepiness 30-45 minutes following a meal and it can last between 15 minutes for the most mild reactions to over 5 hours for high protein meals, ... more
Hi Vhris Sorry to hear what you're going through, the main ways of getting diagnosed r through regular monitoring of ur blood ammonia levels and also citrulline levels. The other way is to actually... more