Thursday, August 14, 2008

The Name of That Disease!

I posted a couple days ago about what could be the presenting complaint and ultimate diagnosis for the person receiving 7 kajillion tests, and it seems like people tended to coalesce around fibromyalgia or ETOH.

The initial presenting complaint was fatigue worsening over a period of a couple years and ultimately getting to the point of disrupting daily life. Also worsening over the past several months was difficulty focusing and worsening short-term memory. Incidental to that was paresthesias in both feet - worse at night.

I suppose it is a little misleading to have this on an ER blog, as the patient was never seen in an ER for these symptoms, but it's my blog and I can do what I want.

The patient presented to his PCP (with great encouragement from his wife) for the fatigue to see if there was anything beyond depression to explain what was going on. He had tried provigil a year or so before with great benefit but had long since run out. The doctor ordered a smattering of blood tests (TSH, CBC, CMP, B12, etc) and gave a couple samples of provigil. The Provigil helped a lot, but not as earth-shatteringly-lot as before. A week later, he got a letter saying that the B12 level was low - 212, and a follow up appt should be made. In the follow-up, the doctor re-ordered the B12 along with a couple of specific markers and a Folate, and prescribed weekly B12 injections. The new labs came back even worse than the originals - 189 - but the Folate and homocysteine/methymalonic acid were normal.

Enter referral number one to Hematology (one month later because that is the soonest to get in). At this point the fatigue has taken a back burner to the neuropathy because, though the fatigue persists, the neuropathy is becoming worse quickly. The Hematologist seems somewhat unconcerned about the B12 levels and thinks it is an incidental finding. He orders a repeat B12 to see how the shots are working, along with Anti-parietal cell antibody markers and anti-intrinsic factor markers, and refers the patient to the neurologist. week later, the patient is sitting in yet another new exam room when in walks the Neurologist with a big shotgun and KABLAM! fires away with every test known to man along with referrals to rheumatology and gastroenterology (which were politely refused).

So now here I am, a generally very healthy 28 year old, having my blood drawn regularly, seeing more Doctors in two months than in the past 2 years, and stuck on a regular diet of pills every day (okay not that many: Vitamin B12 tablets (grape flavored!!), Provigil (1/2 tab usually only on days I work evening or night shifts), Gabapentin (just at night to see if it helps with the neuropathy), and mouthfuls of ibuprofen and tylenol (the ER is killing my feet and back!!!)).

Now I tell you what tests have been ordered and you all jump to fibromyalgia. I just have one word for that: itbetternotbeflippingfibromyalgiamymotherinlawhasfibromyalgiaanditreallyreallysucks.

And somehow I think that ETOH problems are fairly low on the list of likely answers.

So what are the answers? It may end up being as simple as some depression causing the fatigue (although it really is very severe fatigue and the memory lapses and difficulty concentrating or staying focused is quite disconcerting. That, and while I find myself with low energy and difficulty finding impetus energy, I'm not actually sad or... you know... depressed) and maybe just muscle strain causing the neuropathy. But it could also be a bunch of other things, and looking at where that shotgun was aimed, it seems like the doctors are thinking of:

* Pernicious Anemia (though the neuropathy keeps getting worse even though my B12 levels are now back to normal)
* Diabetes (c'mon pregant peeps! That glucose tolerance test isn't anywhere near as bad as it gets made out to be)
* Mercury Poisoning
* Multiple Sclerosis (hence the MRIs)
* Systemic Lupus Erythematosis (I know almost nothing about this disease and I'm scared to learn about it)
* Rheumatoid Arthritis (Really? I'm 28. I thought it was just the LOL's who got that)
* Syphilis (what? You've gotta be kidding me. If it is syphilis, my wife has some splainin' to do)

One thing I'm fairly confident that it is NOT: A very drunk old man passed out and fell off a bar stool. And yes, Sean, you are a comment hog - but as an old cowboy once told me: "You're welcome at my campfire anytime."

Interesting aside (because, frankly, if you have read this far, you are so invested in this post that I can pretty much say whatever I want now): both the anti-parietal and anti-intrinsic factor tests came back negative, meaning that my body should have no problem absorbing B12, and since I am not a vegan and I drink plenty of milk and my total lifetime alcohol consumption equals a couple of chocolates while I was living in France, that leaves us pretty much no idea why my B12 would be low.

Another interesting aside (why not, right?): Vitamin B12 in pill form is usually cyanocobalamin. Without a doubt this ranks among the coolest names for a medication, and it is much more fun to write cyanocobalamin on a history form at the doctor's office than boring old b-twelve.


Glen said...

Have them check your testosterone levels. S/S are similar to low testosterone.

Lisa G said...

Interestingly, your symptoms sound a lot like symptoms gastric bypass patients get due to thiamine, folic acid, B6, and B12 malabsorption. I had my gastric bypass a year ago, and I take my B12 in IM form--it's a lot more bioavailable than the SL or oral version (which I can't take). I have had to double up on my B-complex as well. Did your MD do the "B" vitamin labs? I wish you well, Braden.

Nurse K said...

It's called you work 96 hours in a pay perioditis.

Nurse K said...

In college, there was this girl with "chronic fatigue syndrome" who liked to go on and on about it. Turns out she worked 60 hours per week, went to school full time, and had a kid. Learn a lesson there, chief.

Braden said...

I had not considered testosterone probs, though i don't feel like any less of a man.

The doc is checking Thiamine, folate, B6 and B12, and I know I've gained a little weight of late, but I'm pretty sure I'm not in the gastric bypass range.

Though I worked like an insanely insane persone over the past four weeks, I have not been working crazy hours before that. I've generally been sticking within about 4 hours of my FTE (36 hours) every week, and now that my wife and daughter are back, I'm back on that schedule again.

thanks for the comments!

Tracey said...

Sorry to hear that you haven't been feeling well Braden. I totally understand.

My other blog (titled My Chaotic Life) in my sidebar is all about my recent bout with some funny symptoms that are probably myasthenia gravis.

It totally sucks to have an illness, especially something rare/weird, and to also have a family and full time job on top of it. If you ever need to chat with someone who "gets it" then feel free to email me.

Tracey @ nighttimenursing

EDNurseasauras said...

Really, I was only kidding about the mercury poisoning. Hope you get to the bottom of it soon and feel better fast. Oh, and slow down!

AtYourCervix said...

My first thought was MS - but, sincerely, I hope it's not that.

Anonymous said...

I think low testosterone too. My husband had many of your symptoms. sucks 1) be on the other side of health care (the patient side) and 2) to have your body failing with no diagnosis. Good luck to you.

Minime said...

So, it would be interesting to know what it was in the end.

With all the symptomes and the vitamin levels in a normal range I would say it sounds like exposion to chemicals like the ones found in insect repellents.

Mothballs/paper will release fumes which also affect human. It will also be found in the room air, not only as residue in the clothes.

It will cause fatigue, joint pain, lowered level of certain b-vitamines, depression, agression, skin problems and so on.

Also vaporizer against mosquitos contain the same/similiar chemicals as moth balls and insect sprays.

Even if you have 'normal' exposion to these fumes, you could have reactions to it.

Also the chemicals will stay for months, penetrating furniture and wallpaper and diffuse back into the room air.

You can read on the chemicals and their effects on the body for yourself.

Not the best link but for a a doc you certainly know where to search best for information.

Braden said...

They never did get me an answer. I doubt it is chemical exposure, because we have moved around so much that if it were chemicals, the problem would have disappeared in a new location. Much of the symptoms have resolved over the past couple of years, but I still constantly fight fatigue (working 3p to 3a prob a ly is not helping that) and difficulty focusing (related to the fatigue, probably).

Recently, I read about sleep apnea after being pushed out of bed for the millionth time by my wife who can't sleep through my jack-hammering, and I though that my symptoms seemed to fit pretty well with apnea; but an in-home overnight oxygen test showed no signs of actual apnea, so I still have no good answer.