Well, here's an interesting twist in the plot. After consulting with a neurologist for a second opinion on my narcolepsy diagnosis--it has been determined that I DO NOT have narcolepsy. Apparently, the sleep disorder specialist who originally told me I have the disorder was
an asshole very quick to jump to conclusions without properly analyzing my sleep study results.
Long story short, the neurologist told me he thought I could have M.S. or a seizure disorder. Wow! Just the kind of thing you want to hear from a doctor. Not. After some tests, he told me I am "neurologically perfect." So that's a big sigh of relief, but that still leaves the question--What The Hell Is Wrong With Me? All I feel like doing is sleeping, and it literally hurts to think. My brain feels like it is covered in fog--making it impossible to concentrate on anything. I am so ready to feel NORMAL! Someone fix me!
After consulting my blood test results, my neurologist decided it was very possible that I have a Vitamin B12 deficiency. It is extremely rare for someone to be deficient in B12 because the liver can store up to 3-years worth of the vitamin. (Side note: vegans and vegetarians have to take a supplement to get the vitamin.)
Because of the rarity of the disorder, it is grossly under-diagnosed. It isn't even on doctors' radar most of the time because
medical school usually spends about 2 minutes discussing the deficiency and its symptoms.
What are the symptoms? According to Wikipedia: Early and even fairly pronounced deficiency does not always cause distinct or specific symptoms. Common early symptoms are tiredness or a decreased mental work capacity, decreased concentration and decreased memory, irritability and depression. Sleep disturbances may occur, because B12 may be involved in the regulation of the sleep wake cycle by the pineal gland (through melatonin).
Um, sounds disturbingly familiar. Could it be that I've finally discovered what is making me so miserable? Please!
My neurologist ordered a second round of bloodwork to confirm his theory, as my initial B12 level was 300. A "normal" B12 level is between 200-1100 according to most labs. But the neurologist said the numbers don't always tell the whole story and it is still very possible that I am in fact deficient. (This is probably why it has gone undetected so long--my numbers are, though on the low side, within the normal limits for the vitamin.) Doctors who realize my symptoms line up perfectly with this diagnosis (my neuroloigst!) are smart enough to see past some silly numbers and take a closer look.
My neurologist had the blood test results sent to both his office and my family doctor's office--as I'll be following up with my family doctor to receive monthly B12 injections if a deficiency is confirmed.
Here's where the frustration comes in to play. After a second round of blood tests to determine whether I am truly B12 deficient, my family doctor has concluded that I am "normal." What ever happened to the numbers not telling the whole story? I am still waiting to hear my neurologist's analysis of the new blood work, but I'm really ready to break down and cry. When will I have energy again? When will I be able to think clearly again? :(
UPDATE: NEUROLOGIST'S OFFICE JUST CALLED. THEY SAID MY RESULTS WERE NORMAL. SERIOUSLY. WTF?