How Many Doctors Does It Take to Diagnose a Librarian?

If you were following my saga awhile back, I was quite happily minding my own business when a bus hit me. Or so it felt. I believe the date the bus hit was Sept. 21, 2004, about 2 or 3 in the afternoon. I had had a cold a week or three before, felt a little achey and stuff, but nothing major. Then, while on vacation (add insult to injury) I decided I needed a nap. When I woke up, I didn't feel much better. For whatever reason, I got in the shower. My heart thudded hard a few times, I struggled to hang on to consciousness (still can't tell you if I did.) Then, it happened again.

When the thudding stopped, I felt exceptionally tired. This lead the doctors to believe I was having seizures. Except with post-ictal fatigue, you do eventually feel better. I didn't. And they can see seizures on EEGs. They didn't.

Neurologist after neurologist... I heard everything... I was depressed. I might have multiple sclerosis (by this time, I was getting so clouded I actually got lost in my house). I had really bad atypical migraines. Finally, a neurologist stepped up to the plate and actually tested something.

A mildly positive, but not positive enough, rheumatoid factor. No ANA. No sed rate.

And it was interesting, because whereas I had told the neurologists my legs hurt, too, they all said, "Really? So do mine!"

Enter the rheumatologists. I got a good one right off the bat, unlike the neurologists, who seemed to think I was nutcase. She believes I am in pain and fatigued, just couldn't determine why. I am extremely hypermobile. I have a severe (pathetic, she says) Vitamin D deficiency. And my white blood cell count is every where. Sometimes it's normal, or low, or high.

But there's no explaining the bizarre symptoms. Headaches. Really-exceptionally-even- worse-than-usual coordination. Mixing up words. Flushing (my face, not the toilet). Rashes. Joint pain, muscle pain, sometimes even tingling. And that fatigue.

Right. Fatigue. It's not boo hoo I'm tired. It's got absolutely nothing to do with being tired. It is so pervasive... And I don't feel the need to sleep. I just need to lay down because my neck is not able to hold up my head. It's like being in a room where suddenly someone turns up the gravity, and then dumps seven tons of mud in.

So they come with this diagnosis: CFIDS, the illness with the stupidest, most non-descriptive name you could come up with. It's like describing a flesh eating virus victim as having a slight case of road rash.

CFIDS stands for chronic fatigue immune dysfunction syndrome. A lot of doctors treat it as a throw away diagnosis, but from what I'm reading (great book by David S. Bell, The Doctor's Guide to Chronic Fatigue Immune Dysfunction Syndrome) once you recognize the pattern of the disease, it's pretty easy to identify.

The good news is it isn't fatal. It even, sometimes, gets better at the two year mark (where I'm at.) The bad news is, it's one of those things you contract (they're almost positive it starts with a virus of some sort, not necessarily Epstein Barr or mono (btw, I tested negative for them both)) and it never really goes away. So even if you feel good, you don't feel as good.

You can't go home again.

Right now, I'd settle for not having to lay down every hour or so.

The thing that scares me is that I'm laying down every hour (not sleeping) while on focalin, which is an ADHD drug designed to help you focus (get it?). It keeps me from being too stupid, it gets me up and down the stairs a few times a day. Sometimes I can even ride the exercise bike a few minutes. But it doesn't even pack the punch it probably should.

They don't recommend stimulants like focalin for the treatment of CFIDS. But you know what? I would like to somewhat have a life! I left the house for a twenty minute doctor appointment today and passed out afterwards for three hours. Thank god for the internet, or I'd have no human contact!

I am seeing a specialist in lupus/chronic fatigue/fibromyalgia next week. We'll see how it goes. There is no cure, or even really good treatment for it, unfortunately. They know it somehow affects the immune system, but not how it does. I am hoping to get out of the visit, mostly, someone who can do more than shrug and say, "Not my jurisdiction." I'm in that trap now... we know what it is, but my doctors (both the rheumatologist and my GP) are very young, and not entirely sure what to do with it.

Librarian to the rescue.... I'm giving Bell's book to my GP when I'm done.

The big question for me is will I return to work again... I want to. I'd love to. But it's been now, two years and counting from the onset and I don't feel much better. Some days I can go to the Historical Society, and then it wipes me for the next three. Sigh.

Feeling remarkably non-depressed and positive, though, considering the situation.

Anyway, thought I'd keep you all up to where I'm at.

Comments

thanks for the update

It's depressing to be diagnosed with a chronic disease. I feel for you. Also, keep reading and learning, and don't just assume the docs know everything, they don't. They're essentially guessing about what is bothering you, based on their experience with other patients. Keep focused on the fact that it's not fatal, or completely debilitating. Other people's diagnoses of even worse diseases made me feel gleeful when I was diagnosed with a benign brain tumor fifteen years ago. The symptoms that lead to the discovery, extreme vertigo/nystagmus first convinced the doctors that I had what they term "housewives malaise." An MRI, a new technique at that time, proved differently. Had surgery and I'm good as new, with a great excuse for forgetting people's birthdays.

Re:thanks for the update

Thanks birdie...

Have no fear about my deferring treatment entirely to the doctors: I have learned a lot. I learned that society puts doctors on a pedestal. They do get respect, and it's deserved (for the most part), they save lives. However, we tend to forget they make mistakes. They are human.

I will never forget the neurologist who came in, asked me if I was depressed. When I said no, he turned to my husband and asked him if I seemed depressed. Mr. Shoe said, "Surprisingly, after all this, no." He proceeded to talk to my husband about counseling...as if I wasn't even in the room. We were both so shocked we couldn't say anything.

After that I realized that doctors are people with degrees. They aren't a higher life form. A lot of them are accepted to med school because of quotas to fill, not because their grades or MCAT scores were the best. Certainly you can't be a slouch and get into med school, but you aren't necessarily the most qualified, either. And then there's Mr. Shoe's favorite saying, "90% of doctors weren't in the top 10% of their class."

I love the doctors I have currently because they are willing to say, "I don't know" or "Let me look that up." (Of course, I would love the "look it up" line). I appreciate that. It makes me feel a lot more comfortable that they're doing what's in my best interest than the doctor who quickly says, "No, no, it can't be that..." without any sort of examination or thought.

I will hang in there,and I'm am thankful for the good days, certainly. I'm actually having a better one today than I've probably had all month.

Thanks again, birdie! I am just happy, at this point, to have something to call it. But I can totally understand being glad it's not something worse. :)

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