Wednesday, March 18, 2009

Dear Doctor, Fix Me.

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?

21 comments:

Sophia said...

I'm so sorry, how stressful. In the meantime, have you tried yoga or other relaxation techniques? The right doctor will make all the difference. And as for the B12, if it's good enough for Madonna, it's good enough for you! http://latimesblogs.latimes.com/alltherage/2008/03/madonnas-b12-sh.html

Elizabeth said...

Aw Amanda. That stinks--you might try an endocrinologist. More tests do suck, but mine was fabulous and said that I do, in fact, have a B12 deficiency, and that I could have other B deficiencies (I am a vegetarian). I also had Vitamin D deficiencies, and that can make you all out of whack. Maybe it wouldn't hurt to try supplements anyway? At the worst, you're getting more antioxidants.

I hope this all straightens out, and quick!

The Dutchess of Kickball said...

Bastards, you were so close to a real answer. I am so sorry you are going through all this.

Lindsay said...

Ugh, that's horrible news. I have similar problems, but haven't gone to as much trouble to find out what the causes are. I hope everything gets straightened out for your soon.

Dugout Daisy said...

Have you considered going to see an herbalist??? I know it may sound wacky but they are amazing! I'm currently seeing one and she had me change my diet and I already have noticed a change. Ask around and see if you can find one, have them do a muscle test on you and they can find out what's going on. Really? what have you got to lose? try it!
Hope you feel better soon!

:D

little erin said...

this might sound crazy, but have you ever been tested for lyme disease?

Mermanda said...

@little erin UGH! No! Should I? Eeek...

Katelin said...

ugh that is so frustrating. i have definitely gone through something similar with no one being able to tell me what was wrong and it just sucked. hopefully the dr.'s figure out what's wrong with you soon. feel better!

Angela said...

Damn, I'm sorry! If it helps at all, it took over a dozen dermatologists about a decade to figure out that the reason no acne medication worked for me was because....IT'S A REACTION TO DAIRY, FOR THE LOVE OF GAAAWD.

Angela said...

Yikes! Amanda! Whew, I'm glad this story wasn't as depressing and serious as your first paragraphs made it seem. I'm glad you're HEALTHY!

But, I do hope that they figure out why your sleeping is so weird!

Maxie said...

oh gosh! i hope they figure out what the hell is going on :-(

Sarah said...

oh my, how stressful. I am so sorry to hear about this and I hope that the doctors call back with good news SOON!

Kitty said...

I'm so sorry. I feel your pain. I've had a lot of weird symptoms for years, and I can't get any answers either. Everytime I see a doctor, they test me for diabeties, and every time it's negative. This is followed by a general "I don't know, but maybe it will go away"type of conclusion. Every time! I hope they can work this one out for you!

Kate said...

Gosh, how frustrating for you!! I can commiserate with you on this one... I had somewhat similar symptoms a few years back (extreme fatigue, stomach problems, feeling like I had the flu all the time, achy and gross), and it took a slew of doctors to figure out that I was deficient in almost every major vitamin - I guess my body just doesn't absorb them from food!

I now take a multivitamin, calcium, vitamins C, D and E, folic acid (and 2 others I can't think of now) and I feel MUCH better. I had NO idea that being deficient in those things could make me feel so crummy!

Anyway, I'm sure you have been tested for all kinds of deficiencies if they caught a potential B12 deficiency, but it's just something to think about.

I hope you get some answers soon!!

Jane said...

Do you take a multivitamin? I've heard that can mask B12 deficiency in blood tests. My mom has pernicious anemia, and it made her life miserable until it was finally diagnosed. It took forever for the doctors to get a correct diagnosis, but she had a complete 180 when she finally started getting B12 shots. You might try taking an OTC supplement. B12 is water soluble, so it doesn't hurt to take a supplement if you think it might be an issue. Problems usually start in your mid to late twenties, so it could be you're just not registering on the tests yet. Aaah... I'm rambling. I hope they figure out what's going on.

leni said...

why not take a b12 supplement or multi-vitamin in the meantime?!

Mel Heth said...

Sheesh... Has anyone mentioned chronic fatigue syndrome or anything of that sort?

Tam said...

hey the same kind of thing happened to me. I was diagnosed with hypoglycemia and hypothyroid - have you checked that stuff?

KatieSaysSo said...

Ugh..I am so sorry to hear all of this! It can really be so frustrating when you just dont know what is wrong with you. I can relate I have been going through something similar. It almost makes you wish they would find something even if it is terrible...just so you know what the hell is wrong with ya!

I was thinking maybe an endocrinologist??? And also someone else mentioned...maybe try the supplement anyways...could never hurt.

Take care!!! Will be thinking of ya!

thatShortChick said...

i can't imagine the stress and fears all of this causes for you and, for all of that, i'm so sorry.

you FREAKIN deserve better (read: some real answers).

hope things get better.

your wishcake. said...

Wow, I'm so frustrated FOR you. Don't give up, though - keep digging. It sounds cheesy, but you're your best advocate - that's what my mom always says. (Again, cheesy.) You'll get some answers, you just have to find the right person to give them to you.

You're in my thoughts and prayers, my dear. I hope you feel better very, very soon.