Heigh Ho (with an accent on the Ho)

[muninnhuginn]

(To explain, the notion that some of Shakespeare's comedies, Twelfth Night's probably the best example, are not entirely comedic and, indeed do not, for all characters, have a "happy ending" can be neatly summarised in the two words heigh and ho. Not my idea, but I've always rather liked it.)

So, on the "heigh" side:

• the blood tests done three months ago show nothing at all unusual
  
• I have different second line pain killers that shouldn't leave me in a state of calmly plotting murder when I stop taking them
  
• we're not trying any extra drugs, say the anti-malarials, yet

On the "ho" side:

• the blood tests done three months ago show nothing at all unusual, so we still don't know what's wrong
  
• I have different second line pain killers and I really seem to need them more and more
  
• we're not trying any extra drugs, say the anti-malarials, yet: the rheumatologist seems to be waiting for something to get worse first

And the lets-sample-every-possible-out-patient-clinic saga continues. I go back to the rheumatologist in six months ("unless things get worse before then" he said), am still waiting for the ophthamologist's appointment to come up (six month waiting time) and now have to a the dermatologist too.

Ho hum. It's all such a nuisance, both the symptoms and the rapidly multiplying visits to out patients.

Comments

[pickledginger.livejournal.com]

hmmmm ...

Has the possibility of an infectious-disease vector been sufficiently investigated?

I ask because I have Lyme disease (Borrellia burgdorferi - a spirochete, generally tick-borne), which it took a very dedicated primary-care physician several years to diagnose. (The most common screening test, still, is the ELISA, or titre; but it has a very, very high rate of false negatives. I finally was diagnosed when, for the first time, they did a Western Blot test, and it was off-the-charts positive.)

Now, if I stay on my antibiotics, and get plenty of rest, and don't get sick with anything else, my fever stays low, my joints don't get swollen and sore, my hair doesn't fall out, my skin doesn't get dry and fragile and irritable, my vision doesn't get odd (and the "incipient cataracts" I was told I had have gone away), and the tinnitus stays to a dull roar.

This is not to say you have the same illness ... though if you'd like to find out more, the Web site lymenet.org can be helpful, especially the writings of Dr. David Burrascano, who has a few questionnaires on there somewhere (one on environmental risk level, plus one symptoms) that helped me get the test that got me Dx'd and Tx'd ... but there are a number of difficult-to-diagnose infections (mycoplasma, for instance) that can and do cause rheumatoid-like symptoms.

In fact, a small but growing minority of rheumatologists (including my uncle, now retired, but a brilliant diagnostician in his day, who helped many "hopeless" patients) believes that many, if not most, such illnesses are secondary to infection.

Just a thought ...

Glad nothing nasty's turned up in your test results.

[muninnhuginn]

Thank you for the information.

I do know a little about Lyme disease. I beleive it's relatively uncommon in the UK, but that doesn't rule it out. I hadn't thought of it as a possible diagnosis for the symptoms I have. They certainly overlap a fair bit with what you describe. Worth looking at, I guess.

We ruled out rheumatoid arthritis (a relief since it runs in the family).

We've looked for parvo virus twice now and failed to find it (but it's hard to find). Its long-term effects for adults can include the sort of non-rheumatoid arthritis that seems to be bothering me--for anything from a handful of months to up to a decade.

The thing that worries me most is Lupus, which my Mother may or may not have had too.

[pickledginger.livejournal.com]

I'm not sure about the U.K., but I know there's a lot of Bb infection in northern Europe (where they're a lot less likely to refer to it as Lyme disease).

I also know there appears to be less chronic infection there than here, because they tend to treat more promptly and aggressively. (Partly a result of the insurance paradigm; here, the insurer's goal is to minimize expenses, hoping you'll either get better or have to leave your job, and therefore, your insurer, and won't be on their tab ... so long-term health consequences are Not Their Problem.)

They were testing me for all sorts of scary things, before I finally was diagnosed: Lupus, MS, AIDS ... the Lyme Dx, bad as it's turning out to be, is *still* a relief. There's a lot of rheumatoid-like illness on my mother's side, including one aunt who I'm pretty sure had Lupus, before it was fashionable.

check out this site (I *think* it'll work!):
http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/9c1ac876bb7897f5852568ec0056eb02?OpenDocument

It's an online edition of "ADVANCED TOPICS IN LYME DISEASE:
DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES," by JOSEPH J. BURRASCANO JR., M.D

There's some information on diagnostic criteria that can be helpful with differential diagnosis, and whatever you have, the symptom checklist may help in getting in diagnosed. There's nothing like having everything in one place, on an official-looking form.

Also ... how to say this? "Routine medicine is bad medicine," as my uncle the retired doctor is fond of declaiming. Do what you can to be the special patient. Send a thank-you note, maybe, or Christmas cards. It can make a huge difference in the quality of care you receive. (But I'll spare you the research citations!)

Luck!

[muninnhuginn]

I think, since the symptoms are on a level where, with the current drugs, they're either almost not there or a mild nuisance, everything's being kept to a minimum. (Hell, at least one GP has listened, once. I've had bad joints and poor circulation for most of my life, but there's always before been a way to dismiss it. I loathed and resented my GP's over-protectiveness when I was pregnant, but I'm beginning to appreciate her proactive attitude in sending me off to the rheumatologist last year.) I think the Parvo virus test has been done twice, the blood factors for Lupus once (and I'm fairly sure my mother did have this and possibly a great aunt on my mother's side too. I didn't know it was fashionable). Both, like Lyme disease hard to track down. Lyme disease in this country gets coverage in in the press in relation to people engaging in water sports, canooists and such like, and therefore coming into contact with rats (the which are increasing throughout the UK). I do remember warnings when we were in Austria and Germany in 1998 (scary: if I picked it up then it was while I was pregnant; I avoided forests and concentrated on F1 cars, however!). I used to do a lot of rambling in the north of England on moorland or in pine forest, so the problem there was the midges rather than ticks. Midges love me. I will ask, however, about Lyme at the next appointment. Lyme disease scares me: I'm allergic to a whole heap of antibiotics so the cure could be worse than the symptoms.

What interests me about all these "diseases" with bundles of symptoms is the neurolgical impact. My sense of smell isn't what it was. It improved, typically, during pregnancy, but has never "calmed down" again. It's interesting rather than a nuisance. But remarking to a companion that lamp post A smelled different to lamp post B and you wonder whether different dogs had visited gets some very odd responses! And mood changes?

I'm sure at the moment, however, the non-diagnosis is both a burdon, since there's only symptomatic treatment, and a help (nowt like being a mystery!): I get referred to other people and repeat appointments. At least I'm not having things dismissed as mere small blonde woman being hysterical. I saw the damage that kind of attitude did.

The checklist is interesting. And they're always useful, especially when the brain disappears just before a hospital appointment (this time I didn't shake like a leaf!). We have our own single-item checklist at the hospital: can I play the sax as much as I want?

Anyway, all information is useful. I've read and bookmarked. Thanks again.

[pickledginger.livejournal.com]

Hope some of it's helpful ...

... interesting about the sensitized sense of smell - that's a new one on me! might be hormonal ... mood swings certainly can be!

be well